My cousin died of burkitt's in March of 98 and because she only lasted a month, infact a week of actually being diagnosed, my family and I were never informed of the details. Her passing was a big shock to us all because as far as we knew she was perfectly healthy, we didn't ask too much about it at the time because the word cancer was enough of an explaination. Time has passed and I'm growing curious of what specifically hapened. I've heard stories and seen articles that mention a connection to Hep C and AIDS, I'm just wondering if these illnesses cause the lymphoma or is it genetic, or both? I would really appreciate if someone could clarify a few things for me or even direct me to a site that is easy to read and understand.
Please feel free to e-mail me personally at
leorapearson@yahoo.ca

I AM A WIFE OF A WONDERFUL MAN WHO HAD HEP C AND WAS DIAGNOSED WITH BURKITTS ON MAY 28, 2002 AND DIED ON THE 31ST. I KNEW THAT HE HAD HEP C SINCE FEBRUARY AND WE WERE WORKING ON GETTING TO THE POINT OF THE MEDICATION FOR IT BUT THERE WAS ALWAYS ALL OF THE PAIN HE WAS HAVING IN HIS SIDE, BACK, SOMETIMES TERRIBLE STOMACH PAIN, AND THEN THE MIGRANE TYPE HEADACHES THAT WOULD ONLY GO AWAY WITH A TRIP TO THE EMERGENCY ROOM AND A SHOT OF MORPHINE. I TOO WANT TO KNOW IF HEP C AND BURKITTS GO TOGETHER. THE DOCTORS SAID THAT HEP C WAS NOT PAINFUL, BUT THEN WHAT DID MY HUSBAND HAVE FOR 4 MONTHS THAT COULD NOT BE FOUND IN ULTRA -SOUNDS, MRI, CT SCANS. IT IS TOO LATE TO HELP HIM, BUT WHAT ABOUT OTHERS WITH THESE SYMPTOMS. WE WILL NEVER KNOW WHAT HAPPENED HERE UNLESS THERE IS SOMEONE OUT THERE THAT HAS BEEN THROUGH THE SAME ORDEAL.

Jane,

Don't know if Burkitts is triggered by HEP C specifically, but I do know that we all have cancer cells and that our healthy immune system keeps these runaway cells in check. Unfortunately, some people end up with a glitch in their immune system, so they can no longer fight off the mutant cells, hence cancer. Many of these glitches are caused by viruses such as Epstein-Barr or Hep-C, etc. I do know that when my husband's Burkitts relapsed in the spinal fluid, he had severe headaches. The doctors assumed he had chemical menengitis caused by the chemo that they gave him via the spinal taps for the Burkitts. They could only diagnose this by doing a spinal tap - not a normal test unless the doctors know that you have lymphoma. The doctors did all the tests that you mentioned, but the tests did not pick up any cancer. Why - because it takes millions of cells before anything shows up on a MRI. That did not mean that he didn't have hundreds of thousands of cells. He had no symptoms right before he relapsed other than the headaches and general ill feeling when he had been feeling so well. Eventually, he had many side effecs such as severe headaches, double vision, left eye shut, and weakness/burning down left arm. Still the cancer only showed up in the spinal fluid tests never on th MRIs, CTs or X-rays.

My husband's original diagnosis was found after he had a colonoscopy for pain in right side and bloody stools. The Burkitts tumor had perforated his colon and showed up on a biopsy taken during the colonoscopy. Then they did a CT scan that showed the 6cm tumor located on the right side of his colon. They removed it, but he still was already stage IV. We are currently in our 7th month of treatment. Hope this helps. And I'm so sorry that your husband didn't get the chance to be treated for his cancer.

To Anonymous

Ijust read your post to Jane and was interested in your husband's staging. Why was he staged IV and when was he diagnosed? Also, do you know what kind of protocol he is on? My son's cancer was also in colon and presented quite similarly to your husband's, but his tumor was larger. Thank God they were able to remove all of it. Also, how often does he get chemo? It is just so helpful to know other situations. Your husband too, will be remembered in my prayers. Good luck to you.

Hi everyone. I'm very interested in what might trigger Burkitts, and wondered if anyone else had had an injury in the area where the tumour(s) was/were found shortly before diagnosis. The reason I ask is that my daughter Francesca was diagnosed with Burkitts on 15th December 2000 at age 7. On the 6th December she had been kicked in the back by her 6 year old brother and two days later began complaining of back-ache. In fact she couldn't sleep for several nights because she said it was too painful to lay down. I took her to our Doctor twice in the following week. I explained about the kick from my son and the doctor thought she could have bruising caused by that. A couple of days later she was in even more pain and I took her to the Emergency department of our local hospital where we were told she was suffering constipation, and discharged with painkillers. The next day Francesca couldn't walk. This was now 14th December, so I took her back to the Doctor who transferred her back to the hospital. The next day she underwent x-rays and scans and that was when four tumours were found - two on her spine, one in her abdomen an one in her pelvis. She was immediately transferred to a specialist hospital to commence 8 months of chemotherapy treatment. During the time in the hospital I spoke to two other parents of children diagnosed with non-Hodgkins lymphoma (not specifically Burkitts) who had both had injuries a few days before diagnosis (one was hit in the chest with a hockey ball - her tumour was in her chest and throat - the other had been hit in the groin with a football and his tumour was in his pelvic region. Is this coincidence or are there any other people out there who have suffered any kind of injury shortly before diagnosis.

I am pleased to say that Francesca went into early remission (in February 2001) and finished treatment in August 2001. She is now a very healthy 9 year old, and you could never tell by looking at her that she has been so ill. I pray she remains in remission and I pray for all of you who are travelling this road right now. God bless you all.
Dawn

I have just read with interest your posting. My son was dx in 1999, prior to his dx, about3/4 weeks he was hit in the stomach with a cricket ball.He always thought that is what caused his tumour even though the doctors said a definite no.
It does make you wonder doesn't it???????
He has only just taken up cricket again this year he is now a vey tall healthy wonderful gentle 13yo.
I agree it is so hard to believe that not too long ago he was a very sick little boy.
Aren't they so beautiful and precious:)
Margaret

Margaret
Thank you so much for your story. Our consultant also said that there was no link between the injury and the tumour - to me it seems too much of a coincidence. I'm so glad your son is doing well and playing cricket again. Thank you for sharing this. And yes, they certainly are beautiful and precious. Our family certainly has a different outlook on life since Francesca's illness and savour each beautiful day.
Dawn

My son Michael had Burkitt's on the side of his neck at the age of 5, he was never kicked or hit there. I've always wondered if the Pursian Gulf War has anything to do with it. My son's father was in the War and within three months of his return, Michael was conceived.

Debra

The endemic form (from Africa) of Burkitt's has been linked to Epstein Barr, however there is no known connection with the sporadic form of Burkitt's. The connection to Burkitt's and EBV is the virus is able to act as an oncogene and transform normal genes to cancer causing genes. It has been found that Burkitt's is often found with a translocation ( a gene that has 'moved') on a particular chromosome. This translocation allows a gene that is normally controlled to go out of control. Why this occurs is not known right now.

My brother was dx with Burkitts this past April. He used to work for a company that sprays pesticides. He said that he and another guy would
spray without using a mask and sometimes the chemicals would blow back on them.
When he was in Florida Hospital he found out that a patient in the next room over had worked for a chemical company for about 6 years.
When I was reading up on Burkitts this book mentioned that it has been linked but not proven to be associated with herbicides. It also listed a couple other possibilities but I cannot remember off hand.
I also talked with a girl that I work with and her father was dx with Lymphoma. He had worked on a farm for about 6 years and worked with herbicides. He later was dx and also found out that 3 of the other guys that worked with him also have the same cancer.
Honestly, I think that chemicals are probably a major cause, but I imagine that anything that can mutate a cell or alter cell growth will cause it. I am just guessing though.

Amy :)

Dawn,

I believe there is a trigger as well. My nephew (3yrs.old at the time) was playing in a playground at our local mall. He was jumping in the area with all the balls and fell. He couldn't get up saying his left leg hurt. For approx. 2 weeks this little guy limped. After many doctor appointments nothing was found. We heard everything from he sprained his ankle, to his hip is just out of place, to it's all in his head now he's just favoring that leg. What happened next is the soaking sweat nights, not sleeping, him not eating, and complaining about his left lower side. Back to the doctor we go. There was still no diagnosis they claimed consipation and gave us some dipositories. Anyway, finally after 4-5 weeks after the fall and a middle of the night emergency trip to the hosiptal, he was finally diagnosied with non-hodgkinson lymphoma (Burkitts). So I do believe there is a link there. I think when there is trauma to the body it handles it in different ways. The doctors still don't think there was any connection, but we all do .
Serena

Serena
Thank you for sharing your story. It is heartbreaking to think your little nephew suffered all those weeks before being diagnosed, and think how much the tumour would have grown in that time. How is your nephew now? You don't say how long ago this happened. I hope everything is OK.
Thank you very much again for sharing this. The more stories I hear the more I am convinced, as you say, that the trauma of an injury can cause this. God bless you and your family.
Dawn

Dawn,
my grandmother has just been diagnosed with Burkitt's two days ago. I have since been doing a lot of research since then but you asked about links to injuries in the area. two or three weeks ago nan had a fall, and the reason for her finally being diagnosed was because she was not feeling better (and it takes a lot for my nan to say that!) Nans specialist here in new zealand explained to us that the Burkitt's affected her immune system and platelets which made her unable to recover from her fall. The Burkitt's is only in very early stages and she started chemo on friday night and today (sunday) has begun hallucinations due to her medication. We are all praying and hoping for a recovery. I hope this has helped someone understand a little more of the unknowns of this disease.
Sarah

My step=son just died due to Burketts Lymphoma, and my husband is blaming himself for not having taken his son to the doctors 3 or so months prior to the discovery of the cancer. Can anyone tell me the time period for the cancer to grow? It is such a fast growing one, that I have been telling my husband the cancer had to have been activated long after that period in time. Please share any information on this......I need to ease his mind and heart.

Hello,
I send my heart to you and your family. I can not place into words what I feel for you all.
Just remember cancer is the cause not anyone else. You are right Burkitts is very rapid.
Hold your husband tight and remember your new angel is cancer free and pain free......
hugs,
LeeAnn

Dear 'Sorrow'
What symptoms did your step-son have to make your husband feel that he should have taken him to the doctors. Burkitt's Lymphoma is very rapid growing, as you rightly say. My daughter Francesca was diagnosed in December 2000, aged 7. She had been complaining of excruciating pains in her back and it only took one week before it was evident something was seriously wrong (by one week she could not even walk, the tumours had grown so large and were pressing on her spinal cord). There is no way your husband is to blame, and I'm sure you are right that the Burkitts would have become much more evident earlier than three months. God bless you and your husband.
Dawn

has anyone heard of burkitts being linked with herbicides such as roundup (the weed killer)? i went to altavista and did a search including various combinations of the words: herbicides, animals, dogs, burkitts, lymphoma, human and animals... i pulled up a great deal of info/studies of this relationship. my brother in law 39 was diagnosed with burkitts one month ago - his dog was diagnosed with lymphoma about 1 month before he was (approx. 24 in 100,000 dogs have this disease) - brian lives in a new sub division, had mono when he was in his 20's, works as an engineer but not with chemicals - does anyone have any insight - thank you

burkitts lymphoma stage 1 in adults. if there anyone out there with any information on burkitts in adults stage1 i would appreciate hearing from you. especially if you can tell me the signs the symptoms the protocols and doctors and hospitial which was used it would be very helpful thanx in advance shaindy you can e-mail me at mitnick@thekosher.net

burkitts lymphoma stage 4...43year old brother ..any hope for his survival ...?????????????????

My husband died of Burkitt's Lymphoma-Stage 4. He spent two years in Vietnam spraying herbicides,specifically (Agent Orange)to destroy the foliage. The government knew it was dangerous because Dow Chemicals warned them not to use it because it would kill humans to. He was ddiagnosed with Burkitt's Stage 4 and died within one month. The government exposed our trusting soldiers fighting for our freedom to this harmful herbicide, leaving them ignorant of the dangers it could cause. Has anyone else had someone die of Burkitt's that was in Vietnam/or exposed to similiar herbicides. If you have, I'd like to hear from you. PLease feel free to email me/or post on this site and I'll continually check it. Please, I need your help? Any Vietnam War veteran's wives haave this happen/ or maybe yo have been exposed to herbicides/chemicals somewhere else.My email address is Deborahashar37@aol.co Thank you and I'll be praying for all of you. The government knew and let our soldiers go ignorant of the consequences of the spray. My husbbannd was only 45yrs old and we had a son who misses his Father.

To Lori, Sending your brother hope and prayers for his battle with Burkitt's. It will be a very difficult fight but there are many survivor stories even with stage 4. In January 1999 my husband was diagnosed stage 4, central nervous system and bone marrow involvement, he was 59. He was treated with the Magrath protocol at Massachusetts General Hospital,even after almost 5 years the doctors tell him how thrilled they were to get his Burkitt's in remission. The chemo put him thru hell!! Infections,mouth sores, months in the hospital, pretty much what ever could go wrong did, but he survived. He tells me some times his lies awake at night thinking about how sick he was and wonders why he survived and so many do not. He remains dedicated to help others with cancer of any kind. He has walked 5 marathons and raised almost $50,000. for research. He walks in the memory of those who have lost the battle and he walks for those like your brother who need all the miracles of modern medicine. We will keep you and your brother in our prayers, let us know if he needs to talk to some one who has been there.Our email address is louandbrian@adelphia.net

glad to hear stories like the one you wrote - the stage four and going through hell!!! because i know there are people who do live through it. my husband is stage 4 and he is fixing to do the 3rd chemo. so far it has just made him sick to his stomach and mainly very tired and no strength. he has it in liver, lung and spleen. so many organs...... doing hyper cvad with methotrexate interfecals and also the rituxan ... say a prayer and i will say thank you !!!!!!!!!

my ten year old son was diagnosed with Burkitt's stage 4 on Nov. 7, 2003. He was in ICU for over a week and was on dialysis the entire time he was in ICU. He is heading for his fourth round of chemo on Jan 19 and is responding to the treatment well. Given that he was critically ill and in acute renal failure when he arrived at hospital...I would say he is going to be a survivor!

Dear Beth,
Your husband is the first I've read about that was treated with the Hyper Cvad protocol with methotrexate interfecals and rituxan. We also have in common the stage 4 diagnosis with multiple organ and spinal fluid involvement. I began treatment January, 2001 and have been in remission doing well. I'd love to hear from you, and compare notes on the protocol. E-mail me at karenostanley@yahoo.com

have just found out that a good frnds 13 yr old son has burkitts stage 3. from what i can tell it was found with on the past 10 - 15 days and he has already been thru 7 days of chemo.

looking for any info, such questions that should be asked - positive or negative expereinces that we should be on the look out for, etc.

joe ~

My son is 11 years old, was diagnosed stage 4 burkitts at age 9, November 2001.

The best advice I can give a parent is to keep paperwork, make a folder, read through the paperwork and ask questions. Write them down if needed, but don't look too much on the internet. There are many stories out there that are very negative. I feel the people that have surviving children don't have the time to create a webiste chasing after their healthy children! The parents who have lost their children create websites as a dedication to them and to help them heal after their loss. Just remember that...there are many more positive stories than negative, you just don't see all the positive out here!

The protocol is tough. My son handled it like a champ until the last two rounds of chemo. They ended up having to use a whitiker needle for his spinals after creating a hole in his spine from the taps. The last two rounds of chemo he was sooo very sick. He went from 72 pounds (five pounds of that was fluid from the tumors though) to 48 pounds at the end of treatment. I carried him everywhere, we almost had to go with a feeding tube at the end of treatments. The methotrexate burned his skin and his insides, from his lips to his bottom, hisd intenstines and stomach lining blistered for weeks making eating impossible. It was extremely painful to see this.
He bounced back like you wouldn't believe though. We just went in for a checkup last week. He is five foot one and 92 pounds at 11 years old!!! He has gone though early puberty and has a mustache, hair under the arms etc. He is doing extremely well. We are about to go though a 6 month study for his neurological evaluations. I believe the only side effects he is suffering from is some short term memory loss and perhaps some learning difficulties. It is all easily managable though considering I almost lost him.
The hardest part for him has been the loss of five of his friends from the hospital. He was inpatient so much he ended up just attending school at the hospital for a year and made many friends...who sadly did not make it. He has become hard to death, seemingly unemotional about death and loss. He also seeems to have gone backwards a bit in some ways. He is 11 and almost as tall as me, but still wants to crawl up in my lap at times. We spent many days and nights rocking in a rocker and walking around with his iv pole following us wherever I carried him. Also, two years out...he still thinks he doesn't have to do chores and such!!! :o) Oh how he was spoiled (but that is ok).

Speaking to other parents is good, but never shoudl a paretn look at another child and compare illnesses. I made that mistake many times, everyone is different, even the same cancers can effect one child differently than yours. Some make it, others don't, you have to look at your child and the strength they have. They are so very resiliant.

Good luck to your friends son. It is a tough cancer, but easily beat!!!!!

Hello, our son, age 9, was diagnosed with Burkitt's lymphoma this past November 10th. Went in to the hospital for removal of what they thought was a branchial cleft cyst at his left jaw/neck line and it ended up being a lymp node full of cancer. He was a trooper and finished his five rounds of chemo for stage III (he was somewhere between II and III). We have been waiting since 2/23/04 which was the end of his chemotherapy for a final screening CAT scan to see if the cancer is gone. Today is 3/23/04--he was sent on 3/19/04 in error to a location where they do not do children and it could not be done and now they ask us to wait until 4/8/04--it is so difficult to wait. He still has a central line in place and all his blood counts are returning close to within normal limits--but I can't wait any longer--I need to know if we are out of the woods with him or if more needs to be done--on pins and needles and isn't this wrong of them to cause us after all this to wait this long for a screening CAT scan? I feel like such a meany when I put my foot down...when they wanted us and urged us we needed to pursue all this chemo I allowed them to do all they had to...now when it is all over and WE are anxious to hear of the results the clinic cannot even seem to help us get this final test! I feel so out of touch with all our support because he has been in and out of hospital since November for chemo and constant followup and now...nothing. He still has a central line in his chest and a nurse still comes to draw blood twice a week at home but no doctor's appointments, no nothing...just waiting all by ourselves for this CAT scan as if he never had cancer at all and he can wait. We do not even know what his followup plans will be. I feel left high and dry after being worried to death for months. My husband contacted the director of the clinic to make him aware and he is going to try and push something through to move this along...no guarantees. We live in Maine and this is the only children's cancer clinic that services our area. Please pray as friends seemed all interested in the beginning but have lost interest over the months and just feel he will be fine. For me, knowing is believing. We have been through alot and people who have not gone through it with us could never know. The fevers, the mouth sores, the worries over 0.2 of white blood counts and shots nightly to rebuild them, etc., etc. I finally began to e-mail people regularly just to give them a little taste of the ups and downs we go through regularly...but people just shield themselves and pretty much we are on our own with just the Lord above. I look at my son and wonder if we will lose him in the end? I look at him with no hair and this line in his chest and I can't believe this all happened to him...it all happened so fast and we just had to go with the diagnosis and get on with chemotherapy as it is a fast moving disease...I am still getting to grips with what all actually happened in the last four months! I feel mean to make him keep up at home with his school work...what if in the end he never needed to learn his multiplication tables because he is on his way to heaven? I had him late in life and he has brought us so much joy...we are a family because he was born...would that I could have known I would bring a child in the world who would suffer so much...would I have known. I only hope he was happy to be born and that he will always love life they was he has for his first nine years until this diagnosis. Pray for our continued courage and strength through the maze of human errors that this world is froth of...ours and that of other people. For the first time in four months I am feeling like yelling at the staff for not getting us a CAT scan. They do not want us to have it done at our local hospital where it could be easily scheduled sooner because they want it read by the same radiologists and done on the same machine, etc. Is this going too far? Couldn't the test be done locally and the same radiologists at the clinic read the results? Can't we ever come home to our own physician for his follow ups? Why do we need to stay stuck with this clinic who seems to be so overburdened with kids? Why can't they just send us back to our primary now? Got to go. I am just so anxious to try to get back to normal...if it is truly in remission. Just waiting and I feel it is cruel to make us wait this long. What do any of you think?

Hello
I have just read your post and I so feel for what you are going through, but please hang on in there. The usual policy (in England anyway) is that once the chemotherapy is finished, children then have monthly appointments for blood work etc and any scans that may be needed. This monthly check lasts for one year and then is reduced to two-monthly for the next year, then three-monthly and so on until eventually, check-ups become yearly.

My daughter, Francesca, was 7 years old when she was diagnosed with Burkitts in December 2000. She was stage IV with bone marrow and CNS involvment and underwent 8 months of chemotherapy. She finished her chemo on 12th August 2001, was discharged from hospital and then had her monthly check-up in our local hospital in September 2001. For the first year after treatment she only had to visit the specialist hospital every three months with the other checks done at our local hospital. Obviously, in your country things are done differently. At her check-ups it was just blood work and examinations and she didn't have a follow-up scan (MRI) until February 2003. Our consultant told us that it was not worth doing regular scans after treatment as it takes many millions of cancer cells before anything shows up and she is more likely to experience symptoms if a relapse occurs before a scan would pick it up. He also told us that that is why they will never give the 'all clear' but just refer to it as 'remission' when nothing is detected, as they cannot state 100% that there are no cancer cells present.
Did your son have any scans during his treatment to check how the lymphoma was responding to the chemo. My daughter had CT scan and MRI scan two months into her treatment and was found to be in remission at that time, although had to continue with treatment for another six months to complete the full course.

As you no doubt know, Burkitts is a very aggressive and fast growing cancer and the chemo treatment for it is also very aggressive and intense with a very high 'cure' rate. I'm sure your son is doing great. I know all the waiting is just awful and you feel as though you have just been left to get on with it. Please pursue what his follow-up care will be. As I say, in England, it would be monthly checks. I know 8th April must seem an awful long way off but it will soon be here. While my daughter was going through her treatment I felt that it was for ever, but now three years later she is 11 years old, doing really well - you would never know to look at her what she had been through - like you, I used to look at her with no hair, skin and bones and think she was just fading away before my eyes. Please, please, just hang on in there. I'm sure things will get so much better for you too. Don't ever question whether you did the right thing to bring your son into the world. I'm sure there are reasons for everything that happens and everything we go through makes us so much stronger.
Take care please, and feel free to e-mail me any time if you would like to chat about anything. Its much easier to chat to someone who has been through this as those that haven't could never fully understand what its like.

I will be thinking of you and praying for your son and family, and please let us know how he gets on with his scan on 8th April.

Take care,
Love and best wishes

Dawn

Hello. About 8 weeks ago, my husband was rear-ended in a car. He thought he was fine, 4 days later he ran a marathon - and for the first time, it was very difficult for him. Since then he has had a lot of neck and back pain, burning and numbing in the neck, head, and left arm. Complains of not feeling hungry - thinks he is losing weight (he isn't), can't sleep, complains of "gland pain" but glands do not seem swollen. He is scared and just feels that something is wrong and he thinks he is going to die. He just got some general tests back, and he is + for EBV, his white count is only slightly high (11,000), and lymph count is low. Please help - after visiting this website, I am now wondering if this is Burkitts? He is scheduled for an MRI on April 9. He is basically just in pain all the time - upper legs where they join to abdomen, back, neck, etc... any comments?

Hello! My name is Barbara and my brother was diagnosed in February with Burkitts Lymphomas stage 4 , with the cancer 100% through his bone marrow. We were all very freightened by this. All he kept asking was "am I going to die", we kept saying "NO". He started his chemo treatments, which were every two weeks, at 96 hrs at a time. He did that 6 times and was said by his 4th time he was pretty much in remission. After his 6th round he was in complete remission. He and all of us were soo happy, through all the odds "Thomas" beat it. Approximately 2 weeks after he was told he was in remission he began to get headaches and started throwing up, he went to the doctor and was tested for everything. After all the tests came back okay, but he was still having the bad headaches and vomitting, the doctors did a lumbar puncture, and that is when they found out the terrible news. On July 6th this year the doctor told us that the cancer had come back and it is in his spinal column which meant in his brain as well, and that in the past 19 yrs he only had one survivor. The dorcot told my brother he had 2 choices. Choic #1 was to just give up and live off the morphine until the end, which most choose, or #2 try to fight it with treatments. Thomass without hesitation said " I love life, I love living, lets start the treatments". Thomas had sooo much to live for, and was not going to give up without a fight. On July 7th he started the chemo, and on July 19th he had his 38th birthday, and on July 31st he died. That was the worst thing I ever had to go through. Anyone with a similar situation please email me at BarbaraDeWolfe@msn.com.

Hi! I'm 50 and completed the Hyper-CVAD treatments in July. Happy to say am doing very well and even hurricane Frances could not get me down! I wish the same for all other sufferers.

I'm very curious about the cause/trigger of Burkitt's. I was a telephone worker in the central office and in contact with the underground cables which I found out are routinely sprayed for rats. I was extremely healthy before my diagnosis; even the doctors said "...but you're not sick!". I wonder how many other telephone workers have come down with Burkitt's?

Please e-mail me @ mamatuz@hotmail.com.

Hello. My son is 6 yrs old. He was diagnosed with burkitts in december,2003. He had bowel surgery where his tumor was blocking his large bowel and they had to remove 4 inches to get most of the tumor out. He started chemo and he relasped in the middle of his third round. His new tumor grew larger over 5 days in the middle of having his chemo. The doctors said it was like it was feeding itself off of the drugs they were using. They told me at the rate the tumor was growing we only had 2-3 weeks left with my son. They tried a drug called rituximab (rituxin) to act as a stale mate (to try to stop it from getting bigger to buy them a little time) and the second time they gave it to him it shrank the tumor down to almost nothing. The doctors told me that it was an act of God because the drug is not to shrank the drug down to almost nothing and they were all in schock. Now my son has had a cord blood transplant and we thought that he was in remission but now he has fluid on his brain that is thick, dark, and has blood, debri, and protein in it. We are still waiting for all the test results to come back, so far it is showing no infection so that is throwing it back towards it being burkitts in the fluid. If there is anyone that has had any information I would really appreiciate it if you would email me. My email address is Teresa@copperfast.com Thank You Teresa

My 26 year old Dauhghter finished treatment for Burkitts Non Hodgkin Lymphoma in Feb. 2005 Seven long months of chemo followed by radiation to three areas it had spread to as a precaution. She just had a cat scan that showed a mass by her heart and on two lymph nodes, we have to wait intill next Monday for a pet scan then 48 hours for results. Dr. says it could be an accumulation of dead cancer cells or the worst the cancer has returned and nothing they can do if it is. Anyone had any similar issues? Let me know Mom devistated and going crazy with worry Peggy

Peaches:

I don't know how similar. At age 56 I went through the McGrath protocol from October 2004 to February 2005. The CAT and PET scans looked great in March with only a hint that a neck lymph node might have some cancer left in it. I then underwent 22 radiation treatments on the lymph node ending on Good Friday. I was scheduled for followup PET on May 6. On April 8, after complaining of pain in my legs, a tumor was found in the left hip and the cancer is back in the bone marrow.

I am currently undergoing treatment established by the Nebraska Lymphoma Study Group. In addition we are pursuing a bone marrow transplant. Links can be found at

http://bobaloomusings.blogspot.com

So, I would ask if a bone marrow transplant might help.

Bob

Peaches and Robert,

I'm praying for you both, keep your chins up and keep your faith. God bless you both and everyone else fighting this disease.
faith

Kate and Shawn

Hi we are from South Africa. Our son age 3yrs old was diagnosed with Burkiits. He was kicked in his tummy by another boy while at the day care mother. Within one week his tummy was extended and he complained of severe stomach pain and had difficulty passing stools. He was diagnosed in AUGUST 2004. After 6 months on chemo therapy he went into remission and has been in remission ever since. Doctors are quite amazed because they initially gave him only one wwek to live. GOD BLESS AND KEEP HAVING FAITH.

My 10 yr. old son Richard was diagnosed w/Leukemia. He had had flu symptoms, mild fever in Afternoon around 101, discomfort in abdomen, then there was pain in the jaw. We had taken him to the Dr. twice and blood was taken to make sure it wasn't bacterial. But nothing showed in the blood. His symptoms worsened, finally what looked like a lymph node presented in the groin area.His pain was severe. The Dr. admitted the next morning to do further testing.It was a Tues.on Wed a bone marrow was taken, lymphocites presented and he was dx w/ leukemia. Friday night the first shot was given, the white blood count was down Sat. morning., but he went into Renal failure and died suddenly.
We did not know it was Burkett's until they did an autopsy. We have beat ourselves up because if we had been able to dx it earlier perhaps he
might have had a chance. I have had to make a cosmic leap in faith to be able to go on with my life. But I am always looking for answers. He had been a healthy child.
The discussion of falls or being hit is helpful since he was so physical, I am thinking perhaps he had been hit hard while playing baseball, or in the pool,but I will never know.
I AM SO THANKFUL TO HEAR OF CHILDREN BEATING THE ODDS. tHANK YOU FOR SHARING. GINGER

Sorry to hear about your loss. I recently lost my 10 year old son on June 7th, 2005 after being diagnosed on July 3, 2004. If you need someone to talk to, my email address is tclugston@hotmail.com.

Tracy

May I know how is Burkitt's Lymphoma inherited?

Learned of this site while recuperating from Burkitt's-like disease and chemo but didn't have the energy to participate (in much of anything.)Thanks to those who support this forum. It's hard to read. My heart goes out to you knowing what you've been through. Parents please don't kick yourselves for your children's disease or the way it was handled. I'm a 50 year old RN, sick for a couple days with 'stomach flu' symptoms, worked the next four weeks feeling kinda crummy but had to rupture my spleen to get treatment! The disease etiology (where it comes from) is not at all well known,the symptoms are not severe and the disease progresses very rapidly ( with a capital V.) After surgery I took several weeks of what my doctor later described as "the worst chemo on the planet." This has resulted in remission and some very painful toes but the disease frequently returns. The treatment offered me here in the Seattle area is peripheral blood stem cell transplant. This involves collecting a sample of stem cells, with the disease in remission, taking 'high dose chemo' and radiation to eliminate any active bone marrow to catch, as one doctor said, 'that last malignant cell or two' then those stem cells are returned via an IV to engraft and start up a healthy immune system. This all seems incredible. The disease, the cure and all is a strange enigma. Don't worry if you don't understand it or can't deal with it. For me this encounter, disease and health care from the other side of the bed, has transformed my attitude toward life, death, disease. A caring caretaker is essential to the patient trying to get through this. It's hard to lose the function of what last month was a perfectly good body and chemotherapy can be hard on the brain and mental function. God bless. Keep communicating. It's important.

Can anyone provide some insight as to the possibe connection of EBV and lymphoma. My 14 yr. old son has enlarged lymphnodes in his neck and swelling to the left side of his face. His is complaining of neck pain. After many blood tests, ct scans and x-rays, I was told that he tested positive for mono and EBV. The oncologist that was over-seeing the tests indicated that there was no need to biopsy any of the enlarged lymph nodes. At first, I was revlieved but I am now questioning if the biopsy should be put on the back burner. After reading up on EBV, it sounds like we may not be out of the woods.

to Robin:
My son had the same problem, and finally he had Burkiits lymphoma, please do a biopsy, very quickly,

My sister is 47 and has been diagnosed with Bukitts - she lives in another state to me so I am feeling quite uselless, My mum is with her, but well, I find it hard not being able to do anything to help - I just want to make it go away.

Yesturday she was told that there was a treatment that should help her, but the hospital board said it was too expensive (we live in Australia), so of course we are freaking out about this - the Dr's are trying to convince them.

One of the problems I have is not knowing anything about Burkitts - Cheryl has been in hospital for 4 m onths and is so sick, and I just didnot know if this was normal - reading yoru messages has made me feel better - as I sit here with tears streaming down my face I feel for eachand everyone of you - I wish we had the power to make it all better - no one should suffer this way - God bless you all and thank you for the support you offer to all affectine around the word :-)

Lynda

Dear All,
I was diagnosed with Burkitts after having a 2 week holiday in the sun in Europe,actually being on holiday i was fine enjoying sea,sun,drink,within 2 weeks coming home to Uk i started having pains in my jaw feeling as if i wanted to pull out my own teeth with a pair of pliers,after managing to pull my self from showering one night i was towelling myself down to find a lump under my arm,thinking nothing of it went to bed. going to work next day within couple of hours i was bleeding from the nose terribly, thinking whats the hell is going on,going to my local gp and being rushed to hospital i was diagnosed with Burkitts and was treated with chemo((very aggressive chemotherapy)four complete courses 2 x 9 day courses and 2 x 15 day courses 24 hours at a time and lumbar punctures 17 in total i was allowed out of hospital most times but kept being admitted with underlying infections my own personal experience of this terrible disease is i wouldnt let this get me down at any time and got out as much as i could even just for a walk we all need our own space and time to reflect on whats going on (mentally and physically)Anyway dont give up and may anyone who suffered or suffers from this try n keep well as i try to i still go for checkups every 2 months now and everything is going fine

My cousin was just diagnosed with Burkitts. He had two teeth removed and then a tumor started growing there. He was hospitalized for antibiotics and then surgery. They removed the tumor and discovered that it was in the jaw bone. He just had a bone marrow done in Friday 3/31 and the final results wont be back for 10 days. He is now in the hospital awaiting his first chemo treatment tomorrow morning. It is very difficult for me because he is like my brother. He is only 35 years old. Here is our small town St. Joseph Missouri the doctors said that they have not had a case of this since 1979. They say there are only 300 diagnosed the US per year. I need to be optimistic however I am a nurse and I have seen the worst. I just want to spend as much time with him as I can. I love him very much and it hurts me to see him going through this pain and fear of the unknown.

My cousin Danny died 5/21/06 of Burkitt's. I just can't believe he is actually gone. Just two short months.

I would really like more of an insight into this disease, 25 years ago my mother found out she had Burkitts, the same day she found out she was pregnant with my sister.She died when i was 5 and my sister was 6 weeks. Throughout my life I've been told Burkitts was a rare type of cancer, but now i've read some of these messages i'm not so sure??
My sister was apparently one of the first babies to be born under chemo, and had to undergo some pretty extensive testing herself. She has lead a healthy normal life, as have my other sister and myself, but now i am a mother myself, should we be concerned? is this something that could be hereditery? also, would my mum maybe have had a better chance if she weren't pregnant? or was it just that not enough was known about this disease in 1981?

My mother died of Burkitts Lymphoma on feb.17 1979, she was only 42 yrs old.not much was known back in the late 70,s I was only 16 at the time and had no idea what was going on.Now 26 years later I have much more knowledge, im a nurse now xs 23 years.I never could find out much info on this .People look at me like Im crazy when I tell them what my mom died of because they have never heard of it.My mom didnt have any tumors, it affected her whole central nervous system, even with chemo and radiation she passed away with in a month of diagnosis.She always seemed to c/o back pain all the time, the yr. before she died she suddenly became insulin dependant diabetic, but then after a few months she was off the insulin. I distinctly remember her telling me how her jaw hurt all the time.About a yr before she died she had been diagnoised with mono and was even in the hospital a couple of weeks.

Id like to know if burkitts is inheritaed or not, i sure have been feeling really run down lately and have absoutely no energy,i do have perneouis anemia, but it seems more than that to me. Any advise out there?

Cindy,
Your Mother's symtoms sounded just like mine...the jaw and back and losing breath. Burkitts is actually a lymphoma/ Leukemia. I had no large tumors but had tumors all over. The loss of breath was caused by the leukemia part. The disease attacked my bone marrow so I had lowered blood counts...so low that not enough oxygen was getting to my muscles. If you are worried about Burkitts causing your loss of energy get a blood test to count your red and white cells and platelets. From my understanding if they are not substantially lowered Burkitts is not the cause of your loss of energy. Good luck.

James, thank you for your response and advise, it is most appreciated.Cindy R.

Hello,
My father has just told me over the found that he has been diagnosed with Burkitt's Lymphoma (after lower MRI, Biopsy last week and Upper MRI and blood work today) He has a large, spreading mass in the abdomen (can feel it and see - 13 inches), with other masses in the same area and apparently it's in the upper lymph system as well but not visible externally. He has been told he will be going into a Cancer Treatment Center tomorrow (London, Ontario, Canada) as an emergency patient for aggressive treatment - aggressive chemotherapy we guess? Any comments would be so greatly appreciated,... reco's on web sites for prognosis, treatment, etc... anything. Thank you. Marni

i am truly sorry about all the pain and suffering each and every one of you had to go through. i have not had anyone in my family to have actully have gone through burrkitt's lymphoma but i do know how you feel. earler in the year, my mother was diagnosed with breast cancer and i went through a phase of depression and hopelessness because i was not able to help her. i am truly blessed that she caught the cancer before it could do any real damage and hurt her more. to be honest i have never heard of BL until recently and i only heard of it because it was the disease given to me as an assignment in my biology class. i can only offer a little information and few words of confert to those who had or had to watch their love ones suffer. BL is a disease that is dominent in central Africa. it is a genetic mutation between chromosoms eight and fourteen, and two and twenty-two. as one person mentoned, everyone has cancer cells. at any time these cells can be activated. as i recall in a reading in my health class, something as simple as a bruise or cut could activated these cells. for example, a bruise is a leackage of blood under the skin and a cut is puctured skin. inorder to repair damaged areas, the body causes red blood cells to multiply rapidly to create a scab or just to heal. uncontroled cell growth results in cancer. i may be only a freshmen, but i do beleive that this can cause BL. however, i do not understand the complete science of it, so please do not trust me on this. many different factors effect the devolopment of BL such as hep- C, HIV/AIDS, etc. i am sorry but that is all the information i have right now but i can garante you that even when this assignment is complete i will continue to study about this subject and post it here. some people may ask me why i do so much for people that i do not know simplely because i am only fourteen a should be worried about boys and parties. i simply answer them that it is because i am so young and able to do outstanding work with a few books, some good friends, and a big heart and because i don't like to see people in pain, even complete strangers. i hope that hope is not far from your hearts and that determination is not far from mine.

hold on to hope
and let it give you wings
for all things are possible
in reality and dreams

hold on to hope
let it carry you away
to determination
for your loved ones to stay

hold on to hope
for if you let it go
there is sadness and depression
hope you'll never know

hope is the hand
that reaches for love
let us watch the flight
of the beautiful white dove.
-Lady Dove

Hi Dawn, I was diagnosed with Burkitts in Jan 04, just after returning from my honeymoon !.
Apart from being allergic to getting married, I knew in my own mind that something triggered this, and I have two theories.
Two weeks before my marriage I was playing football, and as the goalkeeper I went in for a challenge. I received a horrific two footed challenge to my nether regions which left me black and blue all over my groan area. With glands in that region I thought this could have triggered something. Also I visited my friends just before xmas to drop presents off for the kids and play fighting with them, one swung on my neck and I recall that being quite painful, and this is where my lump developed. So I have two theories that could relate to mine.
Glad to say I keep going back every 3 months and all seems great, but I have put about another stone of weight on. Has this happened to anyone else ?. Not sure whether it is me just living life to the full now, being lazy or whether medically something does make your metabalism slow down ?. Anyone else noticed this ?. Rgds, Alex

My father is 67 years old. He just survived the sixth round of
chemotherapy in respond to a diagnosis of Burkitt's Lymphoma.
I see that most of you are talking about very young people with
Burkitt's. Dad is so strong, but the last round has left him
extremely weak and with severe neuropathy. He will need
skilled nursing and rehab for several months. My prayers are
out there for all of you dealing with this killer!

burkitts develope in the immue system. it sounds to me that the people who had injuries before they were diagnosed may have had some problems with their immune system or prehaps a weak one.

I had no injuries and was in near perfect health when I was diagnosed.

Bammers

Same w/ my husband. In his 55 yrs. he never was sick - never in a hospital. Then BOOM! IV stage burkitt's!! Seems so unbelievable..

By Norm on Tues. March 13, 2007

In the summer of 2005 (I was 76 years old at the time)I started to feel "not well". You know, not really sick but just did not feel normal. I went to 3 doctors and got no answers. As time went on I began to have trouble
breathing which the Doctors could not understand.
Finally on Aug. 21, 05 I called 911 and the fire\
rescue EMT's told me I had a 50% loss of oxygen, and that we need to get to a hospital right away.
They took my vital signs including the little gadget they put on your index finger which measures your oxygen intake. At the hospital
emergency room I was fortunate to see 2 very good
doctors, 1 a pulmonary specialist who immediately
had a scan done of my chest. He found a grapefruit
sized tumor which was blocking an airway so oxygen
was not getting to my lungs. It was a very aggressive tumor which, if I had delayed another
day or two getting help, I would have died.

The doctor did not know it was Burkitts and could not get to it to do a biopsy so he was able to reduce it with Steriods and finally 5 days later
he was able to do a biopsy and identified the
tumor as Burkitts.

4 weeks later I had a "port" installed and then
started what the Oncologist said was strong and
intensive chemo. I was lucky that most of the
treatments were in a clinic near home so going there 2 or 3 times a week was not too bad. I
did not suffer the naseau that most people get
but I felt REALLY bad all the time and could do
nothing. I had several infections which interrupted the chemo which went on for 8 months.
I was told I had the Stanford 5 protocol.

I lost 35 pounds and could not eat. No food means no nutruition and so my blood got to be a
mess, white cells, red cells, platelets, there was always something wrong. I had five blood transfusions.

Finally toward the end of my Chemo I got advice from a nurse that I should try making enhanced
milk shakes to get some nutrients into my body.
I also found that I could eat good homemade soups
which friends brought me. I put Ensure, Boost and
other stuff in the shakes like fruit, Whey etc.
and I started gaining weight and feeling better.
Mixed it all up in the blender. I still do that
and have it 3 times a week for breakfast.

I have been off chemo for 11 months now and feel
good. I do have some Peripheral Neuropathy in my
feet (numbness) and some soreness/tiredness in
the legs. I go to the gym or pool 5 days a week
and can function pretty well for a guy who will
be 79 years old next month. I get a PetScan CT every 3 or 4 months to make sure it does not come back. It is in remission.

I believe that Burkitts is caused by a malfuntion
in your immune system. Without the 24/7 care my wife gave me I would not have survived. A great
pulmonary doctor and oncologist helped immensely.

At my advanced age when I got Burkitts most people have some health problems already. What I found was that whatever problems you already had were made worse by chemotheraphy. But I am alive
and happy! If I can help anyone please write me.

Norm email: namnorm@aol.com please specify
Burkitts as your subject so I will open your mail, as I do not open mail from strangers.

Hello! I am new to this site but I need info and I need it fast please!!! My 5 yr old nephew is sick and the drs do not know what is wrong...the last dr my sister took him said it was this disease....how did he get it? where did it come from? what do we do? where do we go to get tested? can someone please help????? my email is ktrymom75@yahoo.com please send me all the info you can at this email Thanks

Lui Ubilla, 27 years of age, healthy with no signs of any sickness began complaining about a swollen and inflated stomach 2 weeks ago. After 4 days, his stomach was still very swollen, and it had become evident that the swelling was not a result of something he had eaten or a form of clogged gas. He checked himself into the hospital. After 4 days of being in the hospital, the doctors finally executed a primary biopsy removing some of the liquid that had begun to fill up in one of his lungs. They later drained all remaining liquids out. The biopsy (which took 6 days to come through) came inconclusive. They had also discovered two fist size tumors, one behind his abdomen and the other in his lower stomach. A secondary biopsy (4 days until any results came through) also proved inconclusive, so the doctors opted to open him up, and surgically remove a tissue sample from the tumor to see whether it was cancerous or not. This occured this past friday, (13 days after being in hospital). His immune system did not respond to the surgery and the tumor disentegrated, and dispursed in an explosive fashion attacking all his organs. He suffered an immediate collapsed lung and shortly after a cardiac arrest. Within hours all his organs failed and he was on full life support. After 30 minutes of re-animation his heart began pumping on its own and signs were finally coming more positive. Shortly after, the kidney and liver also began operating autonomously. Only 2 days later (this past monday) all organs recollapsed and the cancer was by then spreading at an uncontrollable rate. They had finally determined that Lui had burkitts lymphoma cancer. In a last attempt, steroids did nothing to stop its expansion. Lui passed away yesterday morning 04.11.07, a whopping 17 days after checking into the hospital and only 2 days after being diagnosed with cancer. How quick it all happened is near impossible to grasp. He was happy and cheerful, talking and entertaining all his guest until he was taken to surgery. That was the last time he spoke to any of us (4 days later he passed away).

Greetings everyone and Dawn,

I am 24 years old and was diagnosed with stage 2 Burkitt's at the beginning of April 2007. It appeared as a right-side abdominal tumor that was blocking part of my large intestine. I just finished my 2nd cycle of chemo (21 day cycles of Methotrexate, Rituxan, Hyper C Vad, ARA-C via spinal tap, and a dose of Andreamisen(sp??) that I receive every other cycle). My doc says I must go through 8 complete cycles. I think she is following protocol developed at MD Anderson in Houston.
Has anyone had this same treatment that could offer insights? Would any survivors who had this same treatment protocol be able to enlighten me about how long after chemo it took to get feeling back close to normal? I'm from Colorado Springs, CO. My email is jeffrey.hegewald@gmail.com
Thank you for your time and God's blessings on everyone who is fighting this same disease.
-Jeff

I was diagnosed 7-05 at the age of 50 and started the MD Anderson protocol. You, being 24, hopefully will recover sooner. I too was scheduled for 8 cycles. As it kept going the schedule slipped because the bone marrow took longer to recover. After 5 cycles my bone marrow wouldn't come back so they stopped. After they stopped the treatment I was expecting to be 100% after a month...it didn't happen. I had very little energy for a while. A month later I was very tired after a few hours at a desk job at work. I don't remember how long it took to feel "normal" but it was gradual and took longer than a few months. The good news about this Cancer is the treatment is very effective and the Cancer is so fast growing you know if it is working and if it is gone for a year or so it is not coming back. Good luck.

Hello Jeff,

Sorry to hear about burkitt's diagnosis. Good news is you are young and they have caught it early.

I'm a burkitt's survivor myself. I have been in remission for 15 months now.

I was 25 years old when diagnosed and was also stage 2. I also had abdominal invovement. I had a baseball size tumor in my abdomen.

I had CALGB 9251 with rituxan as my treatment. Not sure if that is what u are getting. But, all the drugs you mention in your treatment were in CALGB 9251 and considering we are close in age and stage I would imagine similiar. It was a 7 cycle treatment for me.

As far as the chemo everybody is different. My experience was after a couple weeks off the chemo my body recovered pretty quick. I started chemo in Dec. 2005 finished in May 2006. By mid-to-late June my hair was growing back and I was out excercising living a normal life. Started back to work in July 2006. When you get the chemo out of your body amazing how quickly you can recover.

Today I'm back to my normal self. Living a normal life and feeling great.

You are young and it was found early so you should recover pretty good.

Keep up the fight and keep us posted on your progress.

Thanks to John and Jimmy for your quick responses to the questions I had a couple of days back. I have a few more if you don't mind.... john might be able to offer more insight because he had the same treatment regimen as me 1) At what point in your chemo cycles did you start feeing some of the nastiest effects and what were they?
2)Were the effects cumulative?
3)Did you deal with the issue of possibly going sterile and what have you done in that department?
Thanks again for your time guys.
-Jeff

Hi Jeff,

No problem any questions you have let us know.

1) At what point in your chemo cycles did you start feeing some of the nastiest effects and what were they?

Round 1 was easy for me, no issues at all. Round 2 and 3 - not to scare you but they were terrible for me. I was very sick - nausea, vomiting - developed some bad infections in my arm and got a stomach bug, terrible mouth sores especially in round 3.

The big issue with me was Methotrexate - it did not agree with my body. I reacted very sensitive to Metho. My doctor lowered the dosage of it after round 3 because I was getting very sick from it. Round 4-6 were not that bad mostly due to the lowered Metho level. My doctor thinks I would have been better in rounds 2-3 if he knew my body was reacting so sensitive to Metho.

Round 7 was very tough mostly because my body was so beat up from 6 months of getting beat up. I think round 7 was cumulative effects of the treatment just very fatigued. But, after round 7 took me 2-3 weeks recover - had to have some blood transfusions. But after that I got better everyday. I would say a month after your last treatment you will be getting back to normal.

My doctor says it takes a good 12-18 months for blood counts to return to normal and that has happened with me.

Did you deal with the issue of possibly going sterile and what have you done in that department?

My doctor told me I had a 30% chance of being sterile. He said considering my age the odds were probably lower then that... I thought about doing sperm banking - I did not. I just came off surgery from my tumor, then diagnosed with cancer. I had too much going on and was not at full health - very difficult to deal with all that especially after having abdominal surgery. I figured starting treatment was more important then delaying treatment for sperm banking.

I have read lots of stories about burkitt's survivors sperm counts coming back after treatment anywhere fron 2-5 years later and people having kids. When the time comes and I would like to start a family that is something I will deal with then.

For now I'm happy to be alive considering what I went through. I know not everybody with this disease lives to talk about it. I'm healthy, happy and alive. Everything else is a bonus.

Sorry if this is kind of long.

Best of luck and any additional questions you have, let us know.

This is a tough disease but can be beaten. Keep up the fight!

Hi Jeff,
I was diagnosed in January 2005, I also had the HYPER C-VAD protocal with Rituxin (all the same as what you listed, also the 21 day cycle) my tumor was on my heart. I was in remission after the 2nd or 3rd treatment, but also had to finish all 8 rounds.. I know it sucks, but it is worth it. I had an Omaya port so I was saved the frequent spinal taps.
I never got sick, but I was very careful and my fiance kept everyone away that may have made me ill.
To feel normal it took several months after treatment.. and I am never sure if I feel completely normal. But I was 40 when I was diagnosed, so some of what I feel may be age related.
I posted a list for the newly diagnosed a while a go, this has pointers that help you get through many things, if you can find it.
I never dealt with going steril, but my kids are grown and I already had a vasectomy before this started.

Best of luck and be safe
Feel free to email me Bammers@AOL.com. I would be happy to help with any questions you may have.
Steve

Hello all,

I just wanted to give an update regarding my treatments for Burkitt's. I'm 1/2 finished (4 out of 8 cycles complete) of the Hyper-C-Vad protocol with Rituxin. It's been about 3 months since I was diagnosed and things are going pretty well. I had a nasty bout of intestinal infections, despite watching what I ate, after round 3, and I had to have several blood transfusions after this last round. It seems that my red blood cells, hemoglobin, and platelets don't like to recover very quickly. Anyhow, there have been no more signs of the cancer since I finished round 2, and I'm praying it stays that way. The worst part is the damn spinal taps that I have to get twice per cycle. I guess I will have had 16 by the time I'm finished. Good luck to everyone who is fighting this.
Cheers,
Jeff

Hello, I am new to this site. My son Sinjin who just turned 13 has Burkitt's stage 2. Sinjin had pain in his lower right side for almost 3 months. Over that 3 month time peroid I had taken him to the doctor several times. The 1st visit we were told possible growing pains. At that time no blood or urine tests were done. The second time we were asked is Sinjin having problems in school was it possibble he was making the pains up because he did not want to attend school I looked at the doctor as if he were crazy my son is on the honor roll and loves school. Sinjin has put up with being picked on in school for years because he as I like to say marches to the beat of a different drum. And he and many other children are picked on pushed around because they are considered geeks and all this for the mere fact that they are smart and love school and learning. The 3rd time they just said we can't find anything wrong with him. I asa his mother will never forgive myself for not demanding blood and urine tests (he never had either in the 3 month time frame0. On May 3rd the nurse from Sinjin's school called me and said Sinjin came to me this morning and says he has pain lower right side and I felt in the area and there is something there and if it were my child I would take him in today. I told her I how I had taken him several times and they said nothing was wrong and I was sending his sister to come pick him up and I would call and get an appt for the same day. I did that and xrays were taken. By 8am the next morning the hospital called and said get him here for a CT scan today! The same day as CT scan we found out he had a 18cm tumor that is the size of a small basketball in the abdominal area. As the doctor spoke the word CANCER the blood started pounding so hard in my ears that I could not even hear what he was saying. I sat looking at my son the tears rolling down my his face. My mind was racing Cancer this can't be Not my child!!! Not my child!!! God please not my child. The doctor
left the room for a moment and I asked my
husband what did he say he said Cancer. The doctor stepped back into the room sat down and made a list of 4 cancer's he felt it could be.Sinjin looked at him and said "And I going to die, I am only 13 and haven't even had my firt kiss. The doctor looked at him and said there exact words We all die sometime. I wanted to punch him in his face how dare he say that to my child. I did let him know that his bed side manner left alot to be desired and I would suggest that he never say that agin to my child or any other child for that manner. I have gone on and on here and I am sorry. Please go to my sons site at www.caringbridge.org when you get there go to visit then type in my sons name no spaces sinjinandrukates they will ask for youe email address and you will then need to create a password. The site is free. You can read Sinjin's Story, my journal and also sign his guestbook. It would take pages for me to tell you about our journey thus far. I also like many of you want to know what triggered this. We live what I call a pretty boring life no vacation in over 5 years, to work for us each day and home againt he same with Sinjin to school and home.
I have wracked my brain because of our lifestyle is the same day after day to figure this out and what has been different or maybe something is the same compared to other's with Burkitt"s. My list so far is

1. Sinjin is big for his age
2.He was kicked in his testicles before this started.
3.We burn our garbage
4.Behind our property this past year they have bull dozed about 100 acres and burned cedar and oak trees for 3 months the smoke and smell was terrible day in and day out they are now building houses.
5.We have a pool and Last year for the 1st time I hired a company to treat the water. They come once a week.
6.Durning pregnancy I almost lost Sinjin 3 times.
7.On the day after he was born we were leaving the hospital and a drunk driver hit us and we went right back into the hospital.
8.Husbands brother came to stay with us then we find out he has hepetis C.
9.In our area we will hear on the news you can stop boiling your water it's now safe to drink and we never knew we were supposed to be boiling our water yuck!
My list goes on would like to do a compare many of these things with others.
Livingstrong with courage,faith & hope
Lorna Sinjin's mom

Hi Everyone!! My boyfriends brother Danny, had just past last Tuesday 7/3/07. He was a healthy man 6 months ago and the Lord took him from us in a heartbeat. Danny suffered severly, had all the treatment but finally the cancer just spread so rapidly and his kidneys started to fail. He lived 1 block from the World Trade Center and rumours are there are more people with Burkitts in the buildings next to him. We miss him so much and I wish there was anything we could do. Anyone know if those living conditions contributes to Burkitts?

IN MEMORY OF DANNY!!! WE LOVE AND MISS YOU!!!
45 yrs young

Still Livingstrong...Sinjin is a fighter
2 more cases of Burkitts in our area!!!
What the hell, now Imore than ever want to know what Triggers this monster Burkitts

www.caringbridge.orgvisit/sinjinandrukates

MY HUSBAND WHO IS 45 YRS. OLD WAS DIAGNOSED WITH NON BURKITTS LYMPHOMA. HE IS A LOGGER AND WAS HIT ON THE SIDE OF HIS TEMPLE. ONE WEEK AFTER THAT HE COMPALAINED OF THE SWELLING NOT GOING DOWN, BUT GETTING LARGER. THE DOCTORS THOUGHT AND TREATED IT AS A HEMOTOMA. WHEN THEY DID SURGERY TO REMOVE THE MASS, IS WHEN THEY FOUND THAT IT WAS A TUMOR. HE IS GETTING THE SAME TREATMENT THAT MOST ALL OF YOU ARE. IT WAS CAUGHT IN STAGE 1. WHAT IS A OMAYA PORT? HE ALSO HATES THE SPINAL TAPS.