I have Large B cell lymphoma - NHL primary bone ofr the spine. I have had 5 RCHOP TX so far. Has anyone had or have this DX? Would appreciate any information.
nurse73-
wow, talk about a rare subtype. I found scant information on PLB, or primary lymphoma of bone. Found one study, published last year (Journal of Clinical Pathology, 2009;62(9):820-824), but it doesn't share much beyond prognosis (very favorable at early stages) and discussion of phenotyping. The researchers behind the publication can be reached at:
P.C.W. Hogendoorn, Leiden University, Medical Center
Dept. of Pathology, POB 9600
L1-Q, NL-2300 RC Leiden, Netherlands
What can you share with us regarding your experiences? Symptoms? Treatments?
Ross
nurse73:
Found a couple more (I'm assuming you're a nurse and have journal or pubmed access?):
"Primary lymphoma of bone: an institutional experience." Leukemia & Lymphoma, 2008;49(11):2125-32)
and
"Primary Lymphoma of Bone in Adult Patients." Cancer, 2010;116(4):871-879.
Ross,
Thanks so much for your time doing some research. I wiil look up the information you suggested.
God bless you,
I was diaganosed with large B cell lymphoma primary left femur Stage III in January 2009...received 6 rounds of RCHOP (every other week) and 20 radiation treatments to my femur...I am now 15 months with no evidence of the disease. I really had little side effects from the chemo and th eradiation was uncomfortable to the skin during the last week...all in all...not a horrible experience at all.
Cispages,
Thank yoiu for your comments. I think it is amazing you had little side effects with the RCHOP.
I was DX with Large B cell lyphoma primary bone of the spine stage IV in March 2010. I was told maybe I would live until May 2010. I almost decided to do nothing because I know Jesus Christ as my Savior & do not fear death-however, I felt the Lord was not done with me yet. I started RCHOP chemo therapy with Zometa TX’s to try and stimulate bone loss in my spine, Neulasta injections to try help with white blood cells. Because of the many tumors in the thoracic & lumbar was not given radiation. I am very thankful because with all the fractures in my spine I am not paralyzed and have mobility. With the chemo, neulasta & Zometa TX’s I had alot of bone pain everywhere, jaw & ear pain, stomach pain, bloating, abdomen pain, nausea, constipation, fatigue, headaches, with of course lowering of white blood cells and other lab values. Just about 17 days after chemo I would start to feel better and it was time for another chemo Tx. I saw others who had a lot worse side effects so I certainly could not complain and am very thankful. I have had 6 RCHOP TX’s then my MRI"S showed a decrease in spine tumors & no new tumors. My Doctor stopped the chemo said he saw no difference in 6 TX’s vs 8 TX’s. I will have a PET scan just to check other areas. Hopefully I can go back to work next month-I can’t lift and my spine is very fragile but what a Miracle -Only God knows what time we have on earth. (As a note - my younger sister who was 50 yrs old no health problems died in her bathroom of brain aneurysm before I started TX-so we have no guarantees).
I wish you a continued productive life. I am a nurse, too, and only know too well how fragile life can be. I learned that stuff does not matter...it's all about family, friends, and prayers. God speed.
cispages,
I was told last week that my cancer is in remission & no more RCHOP chemo TX (had 6 TX). I went back to work yesterday for 5 hr's. I still have pain in my back & hips -maybe that is because I had many Fx's of the spine before chemo. Did you have any pain after your TX was completed?
I too did have joint pain and muscle aches and spasms (sp). Back, hips, and legs. Most I think from the Rixtuan. I finally have learned to manage it. I take 2-4 pain meds a day along with muscle relaxers. It took me about 3 months to find what works. My oncologist doesn't know where the pain is coming from but she understands that the pain is real. I do all my own yardwork, golf, and work 40 hours a week. I used to dull the pain. I am much better getting rid of it. I worried about addiction but after talking with my counselor and oncologist I am not in the danger area of addiction. I have learned to set boundries and rest before I am totally exhausted. Doesn't always happen.
stitches87
dx 4/09 follicular nhl
cr 10/09
Thank you for sharing.
Hi I am a nurse as well. What is up with all of us nurses with Lymphoma? I was having right hip pain for the last 8 months and was given the standard corticosteroids and told my xrays showed mild arthritis. Well in the last xray it showed a bone fracture without falling. The doctor was suspicious and wanted a biopsy. It showed this as being the primary site for DLCB lymphoma. The Pet scan also showed it in the spleen as well as the bone marrow..stage4. I will be starting RCHOP next week after the port is put in. I have had severe back, neck bone and hip pain it seems forever but was put off as having arthritis. I also have HepC which does have a lot of these symptoms which made it hard to diagnose. Please keep me posted on your progress.
Loril
Thank you for sharing your information. I have been back to work 5days a week 6 hrs a day. Since I had so many FX of the thoracic & lumbar with a large amount of bone destruction that my back is weak, I still have pain but I am so thankful. I had a pet scan & MRI with and with out contrast last week and will get the results probably tomorrow. I had my last RCHOP chemo July 1, 2010 these tests are to eval if I have any mets or if the spine and hips have any new bone growth or additional cancer.
I'll keep you in thought and prayer.
.
I really salute you for working through all the pain. Please let me know how your PET scan was as I am praying it was clear. Since July have you had any symptoms or discomfort from the treatments? I have read in so many threads that people are on their second treatments. That tends not to be very encouraging at times. It would be helpful to hear from some 5 year survivors. The way I look at it is that God is in control. Tomorrow I go have the port put in. I will talk with you soon. Blessings Lori
Thank you for your prayers! My PET scan was clear, there was one small spot on a lung too small to DX. My MRI did not disclose any new areas in the bone and some new density which is a real positive with the natural bone building supplement I am taking. God provides Angels to help us in many ways. I have really been blest with so many people that gave in so many ways, I look back and see what a Loving Awsome God we have- not realizing at the time the importance of of even the smallest of contact with someone or information that I received that was so very helpful.
Because of the amount of bone that was distroyed, bulging discs and twisting of the spine I still have pain. But, I have found (by one of Gods angels) a natural product called MSM that has helped with the swelling of bulging discs and inflamation. Chia seeds have been a blessing that gives me energy to work. I have low white blood cell count still with low neutrophils because of the bone damage and am careful about trying not to be around sick people.
I work for a Doctor that is very knowlegable that prescribed medication during chemo to help prevent damage to the liver and kidneys-that is a common result of chemo. My Oncologist did not suggest or seemed to know preventive
medications for safe guarding organs that can be damaged during chemo. I was also able to get some natural supplements to help with side effects and low white cell blood counts due to chemo. I will say to the defense of my Oncologist when I talked with him about the additions on these things he was not convinced they would help but did not say I could not take them. Now he is quite amazed at my continuing recovery.
No matter what - it is all the power of the Lord to heal but He does provide Doctors, medications, alternative treatment and knowledge.
Remenber you have to have to be your own avocate and educate yourself. I will pray for you.
I am thankful for today-I am not existing I am living..
That is so awesome..Praise our wonderful God...Lori
Paul, this is a great thread with a good result from treatment! Good Luck!
Kb