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Burkitt's DLBC NHL

alya219
Posts: 3
Joined: Apr 2011

I am new to the boards and have recently undergone treatment for Burkitts DLBC NHL and was looking on here for people who may have gone through the same thing and was unable to find anything related that was not 5+ years old. So I was just wondering if anyone on here has an experience with Burkitt's Diffused Large B-Cell Non-Hodgkin Lymphoma?

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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

alya219
Posts: 3
Joined: Apr 2011

Well Beth thank you for the warm welcome, My name is Alyson. Honestly I wish I had found this months ago it would have been great to have for all those long hospital stays while I was getting chemo.

In August I was diagnosed with stage 4 Burkitt's DLBC NHL and fortunately enough for me I was in complete remission Mid-December. I recently had my 3 month check up and will go for my CT scan in June. I was just looking to see who was out there that might have gone through it that had some insight of what I can expect. Or maybe someone I could help as well!

ML1234
Posts: 4
Joined: Jun 2011

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.

mema3
Posts: 2
Joined: Jun 2011

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,

mema3
Posts: 2
Joined: Jun 2011

I DID!! in 1999,been thru the mill,still surviveing,,and am 58.Had a stemcell transplant after 3x's it recurring,and now it is in my neck,been watching it,but now I have to have a new therapy drug ZEVALIN,,and am trying to find someone who has had it.....How r u doing?

pruds
Posts: 1
Joined: Jun 2011

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

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

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

Jartal
Posts: 6
Joined: Jul 2011

Hi my name is Julio I'm 52 yrs old. I've always been an outgoing sporty person. I enjoyed yoga and working out. My story goes likes this. 4 months ago as I was riding my scooter back from work I hit a pothole and my back started aching. Not imagining anything other than a back pain, the pain never went away. Finally I had an MRI and it revealed a tumor compressing my spine and paralyzingly my legs. The tumor turned out to be Burkitt's lymphoma. I had 8 days of radiation that burnt my throat making it extremely painful to eat. Because of this I lost 50 lbs.

I started chemotherapy that last for 5 to 6 days at a time. After chemotherapy they give me 2 weeks off at home. I have a very supportive life partner of 17 yrs and would not be here without him. He has carried me through day after day. However, I still find myself very depressed and can not find the light at the end of the tunnel. Many times I just rather not go through this. All I do is cry. I can not stop crying. Is this normal? If it weren't for my partner I wouldn't be here. Does anyone else feel this way? In a week I go back into hospital for chemotherapy. I am seeking advice of those who are or have been where I am. My life now feels like I am constantly hitting a blocked wall.

BLSJEFF
Posts: 3
Joined: Oct 2011

Hi all Burkitts patients and care givers. We are a group of over 200 Burkitts patients, survivors and caregivers. Come find us on Facebook. We call ourselves "Burkitts Lymphoma Society private group" But just find the "Burkitts Lymphoma Society" on facebook and I will send you to the group...

sueskis22's picture
sueskis22
Posts: 1
Joined: Feb 2011

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.

dianneDiB
Posts: 2
Joined: Mar 2012

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.

dianneDiB
Posts: 2
Joined: Mar 2012

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.

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