Burkitt's DLBC NHL

Sorry
Not me, I have Follicular Stage 3 relapsed again...but that doesn't mean you can't stay

My name is Beth and I welcome you here.

Take care

Burkitt's DLBC NHL
Hi alya219,

I am new to the boards also. My husband has Burkitt's DLBC NHL. He was diagnosed in Dec 2010 and had very aggressive chemo (R-CHOP, CODOX-M/IVAC). He had a really rough time Dec-Feb because he kept getting infections due to low blood counts, one being an infection in the esophogus. He's had numerous blood transfusions and platelet transfusions. He had another PET scan early Apr and all the original lymphoma was completely gone, but there were two new spots, so he had two more rounds of chemo. His last chemo was the end of April 2011. They did another PET scan in May and one of the two spots was gone, but the second spot was still there and to our dismay there several more new spots. The Onc was going to do a different chemo called Gemcitabine and Oxliplatin, but he hasn't been able to start it because his blood counts are not high enough. He had a bone marrow biopsy two weeks ago and we got the results last week which was discouraging. He has extensive necrosis in the bone marrow, which the Onc says explains why his blood counts aren't elevating. So now the Onc doesnt want to risk doing more chemo for fear that his blood counts will not elevate once they go down, and in the meantime, the lyphoma appears to be growing. The Onc was going to consult with colleagues from Vancouver, BC and Seattle, WA to figure out what the next step is. We have the appointment to see the Onc tmrw, Jun 16 to discuss what she found out, and to check his blood counts, which is done weekly. We are praying that his blood counts are elevated regardless of the necrosis and that the Onc has positive information from her colleagues. My husband is 62 yrs old. I'm sure that everyone is different, but this has been my husband's experience with Burkitts DLBC NHL. If anyone out there has had this experience, we would like to know.

ML1234 said:

Burkitt's DLBC NHL
Hi alya219,

I am new to the boards also. My husband has Burkitt's DLBC NHL. He was diagnosed in Dec 2010 and had very aggressive chemo (R-CHOP, CODOX-M/IVAC). He had a really rough time Dec-Feb because he kept getting infections due to low blood counts, one being an infection in the esophogus. He's had numerous blood transfusions and platelet transfusions. He had another PET scan early Apr and all the original lymphoma was completely gone, but there were two new spots, so he had two more rounds of chemo. His last chemo was the end of April 2011. They did another PET scan in May and one of the two spots was gone, but the second spot was still there and to our dismay there several more new spots. The Onc was going to do a different chemo called Gemcitabine and Oxliplatin, but he hasn't been able to start it because his blood counts are not high enough. He had a bone marrow biopsy two weeks ago and we got the results last week which was discouraging. He has extensive necrosis in the bone marrow, which the Onc says explains why his blood counts aren't elevating. So now the Onc doesnt want to risk doing more chemo for fear that his blood counts will not elevate once they go down, and in the meantime, the lyphoma appears to be growing. The Onc was going to consult with colleagues from Vancouver, BC and Seattle, WA to figure out what the next step is. We have the appointment to see the Onc tmrw, Jun 16 to discuss what she found out, and to check his blood counts, which is done weekly. We are praying that his blood counts are elevated regardless of the necrosis and that the Onc has positive information from her colleagues. My husband is 62 yrs old. I'm sure that everyone is different, but this has been my husband's experience with Burkitts DLBC NHL. If anyone out there has had this experience, we would like to know.

Hi alya2,
Just wanted to
Hi alya2,
Just wanted to also say,that back in 1999,when they discovered I had NHL/BURKITTS DISEASE,,they went to do surgery to remove a soccerball size tumor in my belly,,but closed me back up,cause my lymphoma had metastized everywhere,,,it was hopeless! I wasn't aware of this''at the time'',and my family pleaded with dr.'s to ''do chemo anyway''!! They did it,just to satisfy my family,,it was CHOP,,,it wasn't fun,,,but for a person who wasn't supposed to live out the week,,,THAT WAS 12 YEARS AGO!!The tumor shrunk,the lymphoma went away,,,A TRUE MIRACLE!!! Yup,I had it recurr 3x's since then,had treatments,which finally resulted in a stemcell transplanat,and was GOOD until last year,,had it recurr,but have been monitoring it! In between,I had kidney cancer and had my right kidney removed,but didn't have chemo or anything!! NOW though,it is progressing and growing,and causeing problems in my neck,so they want to try this Zevalin,,,and MAYBE something else,,trial stuff!!! Radiation beam is too risky for me,due to where it is located,,,so MAYBE I will do teh Zevalin,,,gotta get some people who've had it done,cause I hear good and really bad reports???.....My point to your husband,,,DON'T GIVE UP!!! And its all about ATTITUDE!!! If you give in to this,and think you are going to die,,it WILL affect your recovery!!! YUP,the medicines and wonders of modern day drugs,are wonderful,,,but if you don't maintain a ''kickass,positive attitude'',,,it'll get you!!! WE CAN live with this!! I am liveing proof!!!! Good luck to your husband,,,and if I can help here on this board,,PLEASE LET ME!!! I'll even give you my email....pdobrien@frontiernet.net My name is Debbie,,,feel free to correspond...............and if there is anybody out there that has experienced the Zevalin,,I'd really like to hear from you Goodnight,

pruds said:

Mom has Burkitts
Mom was told about 1 month ago that the chemo worked and killed all of the cancer. Went to U of Michigan this week and was told the complete opposite and that she didn't have long. Cancer had filled her spine and is giving her double vision. She is tough and will not give up nor will the family but would be great to hear if anyone has had this problem. They say chemo won't work again, but I would like to think differently. Any unconventional remedies that anyone knows of? They never tried radiation yet either. Please let me know your thoughts.

Thanks,

Erik

Erik,
What a conflict. If I
Erik,

What a conflict. If I were in your Mom's shoes, I would go for another opinion. Talk about ends of the spectrum, my goodness. Does someone accompany your Mom to her appointments? I ask because sometimes the discussions can be overwhelming for only one set of ears.

I will pray for you and your family.
Kellie

burkitt's
I was diagnosed with Burkitt's in 2008. Treatment was horrible but I survived it and then was on rituxan for 2 years and now am in complete remission. Where are you in your treatment? I had the most toxic chemo and got several infections that almost killed me (sepsis, cellulitis, arachnoiditis to mention a few) but here I am 3 years later alive and thriving.
I would urge ANYONE to go to Beth Israel in Boston, a Harvard Hospital, and ask for Dr. Robin Joyce. She is the smartest, funniest, most empathetic doctor of them all. She will save your life.

Husband just diagnosed with Burkitt lympoma
Hello-It's less than a week since the diagnosis so if anyone would like to contact me-whether you or someone you love has had Burkitts-or if you are now being treated- I would certainly appreciate the company. alya, since it's been a year for your husband I look forward to hearing what is hopefully good news. In any case I welcome your comments.