Burkitt’s lymphoma Symptoms as compiled from our group.
1. Night Sweats. Night sweats was number one on our list and practically everyone marked this down.
2. Abdominal swelling. I had this one, but it showed up later on, but can show up early in the diagnosis process.
3. Stomach pain.
6. Weight loss. This showed up early on me, I just thought all that exercise was paying off so didn’t attribute it to being sick until later on.
7. Swelling in the groin area. This was my first notable symptom, although my testicle swelled it didn’t hurt that bad. They actually did an Ultra sound and told me I didn’t have cancer, had I went for a biopsy at this point I would have found out I had Burkitt’s, but was told the risk from infection from a needle biopsy was high so they didn’t recommend it, instead they said I had an infection, but what actually happened was Hydrocele had filled my testicle. The swelling can also be a lymph node in the groin area.
8. Shortness of breath.
9. High blood pressure.
10. Back Pain.
15. Uncontrollable itching.
16. Persistent Cough.
18. Bladder control problems.
19. Intense chest pain.
20. Tingling from center of back to finger tips with antibiotics.
21. Kidney problems.
Our list came from Burkitt’s patients and care givers of Burkitt’s patients and they are in order, for instance 17 had night sweats and one person had kidney problems. Although these symptoms can be something other than Burkitt’s if you are experiencing one, some or all of these symptoms, or even something else not on the list it is a pretty good idea to get checked out. If you are not immediately diagnosed with Burkitt’s lymphoma pay attention to your symptoms, they may have gotten it wrong if the symptoms persist and don’t get better. Just make sure you go back until you get diagnosed with one thing or the other and if you think you are still getting worse, get a second, third or a fourth opinion. Had I not been persistent and gone to multiple doctors I wouldn’t have made it to the cancer clinic. The bottom line is that you know your body better than anyone, so if you think something is seriously wrong; please make sure you get checked out until you get the right answer.
Something else we noticed is that most in our group showed up with symptoms from fall through spring with the most in November and December in the northern hemisphere, we don’t know the exact reason for this and it could be just a coincidence, but we think it might have something to do with winter and stress and maybe being exposed to more viruses from other people in places like work and school. I have read a bit on vitamin D deficiency lately, that it might be linked to NHL also, but for now they don’t know what causes Sporadic Burkitt’s Lymphoma.
Getting Diagnosed with Burkitt’s
Let’s use our imagination and say that you had a biopsy which ever way you came about it, or just were simply diagnosed with Burkitt’s lymphoma. What do you expect to happen now? Well you will probably be referred to an excellent oncologist who will explain Burkitt’s Lymphoma to you thoroughly and your upcoming treatment protocol and then the next thing they are probably going to want to do is a PET/CT scan to determine staging followed by a bone marrow biopsy to see if the cancer is there, followed by a spinal tap to see if you have cancer there also, and an LDH level test. Not necessarily in that order or all the tests.
The treatment for Burkitt’s is aggressive and grueling and you will probably spend a great deal of time in the hospital. The treatment protocols are aggressive for a reason. The chemotherapy has to destroy all the cancer cells and not leave one behind and if this is accomplished you have a very good chance of being cured like the many members of our group.
Some of the treatment protocols they use for Burkitt’s are CODOX M/IVAC (Magrath protocol) with or without Rituxin, (I had this protocol with Rituxin) or Hyper-Cvad seems to be commonly used and the up and coming one is EPOCH.
BURKITT’S LYMPHOMA IS CURABLE
Chemotherapy targets fast growing cells, like your hair cells. That is why your hair falls out, so Burkitt’s can respond well to chemotherapy, because Burkitt’s cells grow fast. Chemotherapy also will effect your immune system, because your bone marrow produces blood cells quickly and chemotherapy effects the good cells also. Using good sanitation practices and watching what you eat during treatment ( You will probably be on a neutropenic diet like I was )is a pretty good idea to avoid infections, especially during the nadir period or neutropenic.