Hi!! My name is Julie my b/f Mark (17 years old) was just diagnosed with Burkitt's Lymphoma on May 1, 2001..He is recently at St. Jude's in Memphis,Tennessee where he is recieving Chemo.. He has had 2 doses already and he is doing really good.. Neither one has made him sick..Please pray for us.. I really hope he doesn't get sick from this.. From the way the doctors talk, he will have to stay in Memphis for 5-6 months.. And that is over 250 miles from where we live..
They tested his bone marrow and spinal fluid and it had not spread there or any where else so we are really happy about that.. The doctor removed a tumor the size of a grapefruit.. It was connected to his stomach and his colon.. Please keep us in your Prayers.. Thanks alot.. And please keep in touch I would love to hear from everyone..

Julie

I hope this gets to Julie and Mark. My son Jonathan also had a grapefruit size tumor removed from his stomach on Feb. 23,2001 on April 24,2001 we finished our chemo and on May 15th, 2001 after his cat-Scan the Doctors told us there was no sign of any Cancer so see God does answer prayers and another thing he was not sick at all not even on the days he went through 8 hours of chemo. If this gets to you and you want to talk my e-Mail is listed please feel free to use it. ghstbstr@atlantic.net

All my Prayers
Diana Crawford

I also hope this gets to Julie and Mark. My 12yo son Cameron was Dx with stage 111 Burkitts in July '99, Cams tumour was fromhis sternum and spread down into to his pelvic region, but originated near his colon also.He didn't have his tumour surgically removed, chemo was only option. Had a real tough time but in Jan 2000 was declared in remission and has been ever since and is doping great. Chemo for Burkitts is very aggressive but is very effective. Take care.

hey Marqaret... Please email me at julie_tucker@hotmail.com... i am glad to hear your son is doing good... Mark is doing really good he had chemo all this last week and feels really good... well all yall take care.. thanx email me ...
julie

My son was diagnosed with Burkitt's in December 1997 - he was 5. They removed the tumor, which was in a lymph node in his neck and he went through two rounds of chemo and has been in remission since February 1998. Recently he has had seizures and is on medication for that. Has anyone had or heard of this having a connection to chemo? He is doing great on his medication.

Could anyone provide me with some information, as my wife Tina (30 years old) has been diagnosed with Bukitts Lymphoma on 09/07/01. She has numerous lumps around her body and it has also infected the her bone marrow. she has had a lumbar puncture and this was clear. This has all come as a great shock to myself and the family and Tina has started her first dose of aggresive chemo as of yesterday. She is being extremely brave nad to look at her you would think that there is nothing wrong with her. I am extremley worried about her as the doctors can't seem to give me an answer of if she will be alright, i realise that it takes time but i just need some reassurance that she will recover from this.

Gerry,
I know this is really scarry stuff and of course you want to know if Tina is going to be OK, I am no expert in this but what I have come to learn is that Burkitts is probably one of the most aggressive tumours and because of this they respond extremely well to chemo. There doesnt't seem to be many people out there with Burkitts but I have been corresponding with someone who's husband is 1/2 way through treatment doing really well and comparing my sons regime with his it sems to be prety much the same, apart from a couple of drugs, but I am in Australia and they are in America. It appears they take an agressive approach with these tumours. If you would like to e-mail me privately you are more than welcome, it is an emotional roller-coaster but we all seem to find a strength in us we didn't know existed.
Take care. (((((hugs)))))
E-MAIL margaretflack@hotmail.com.au

To Julie & Mark,

My son was diagnosed w/Burkitt's June 6, 2000, They removed a grapefruit sized tumor from his intestine, he has 2 more cat scans left and is doing excellent, if you have any questions or just want to vent you are more than welcome to email me..Yvonne
Grods@ivillage.com

I had some good news this morning (UK Time), Tina is responding to the chemo very well. The lumps she has around her neck are gtting smaller and the children are allowed to visit her tomorrow in a building called the Nova suite which is designed especially for patients & family, its basically like a flat with a cooker, fridge etc. This has been the best news we have had since day one. Tina is developing a sore mouth now, but the nurses have given here a green mouthwash that they said will help. I apologise if i am boring any of you but it is extremely nice to be able to speak to people who can relate to what we are going through.

Many Thanks

Gerry.

Gerry...
No need to apologize for anything, we've been there, and many of us still ARE there! My 20 year old daughter is just getting past her second round of lymphoma. The first was in her spine, and caused a loss of feeling from the chest down. After two weeks of being in remission from that, she developed tumors around her collarbone. It was from that biopsy that they finally diagnosed Burkitts. She underwent stem cell harvesting, high-dose chemo, and stem cell transplant (re-infusion). She's a week past the transplant, and we're starting to see her counts beginning to rise again meaning the marrow is recovering!
No one can say 'I know how you feel', because each persons life is different. But believe me, I understand what families go through when a loved one has lymphoma... or any cancer.
Stay strong for her and the children. Comfort her when her hair thins from the chemo. Tell her friends to treat her as she was before the diagnosis... many will be afraid to even talk to her for fear of saying the 'wrong thing'. She's the same woman she was before. Love her just as much!

Many Thanks John,
I'm feeling more positive now that she will get through this more than before due to the amount of people who do get through this. It is amazing how much you take life for granted and never stop to think about that it could be you. I know that Tina is in her first week of chemo and that it is still early days yet, but so things are looking more good than bad, so we'll just take it one day at a time.

Once again many thanks to you all for your support.

Gerry

To Gerry--Good luck to you and your wife. Don't underestimate the enemy and fight with all your might. You can beat Burkitt's.

to John Y...thanks for your sensitivity to Gerry, especially your comments about missing hair and telling friends to treat her as she was before. You obviously understand your daughter's situation and how it effects her as a woman. Your kind words touched me even though it has been a little over two years since my treatment and I am doing OK. My best to you, your daughter and your family!

Hi all,
My name is Robert Delamater and my 4 year old nephew was diagnosed with Burkitts 2 days ago and went to his first chemo treatment today. The spinal tap was clear and the doctor said his marrow was clear, but there is a mass of the cancer surrounding his heart. They told his mother that IF he makes it through the next 3 days, he should have a 75% chance of beating it. Please keep him and his family in your prayers. His name is Brent Dasher.

Hi everyone, everybody seems so supportive and I would like to share my sisters story. My sister was 35y.o.and two months pregnant when she found a lump on her left breast. she was misdiagnosed as having a swollen milk duct from pregnancy. the tumor continued to enlarge for three more months.
During those three months she continued to expressing to the doctors that something is wrong. Sept. 2000,at 32 weeks gestation, it took for her breast to be twice as large as the other breast, she couldn't lift her arm, and severe pain before a fourth doctor finally said "this is not normal for pregnancy or non-pregnancy". He was the first to take her serious and worked her up for cancer. the nightmare came true the very next day- Burkitt's-like non-hodgkins lymphoma. They delivered her daughter at 32 weeks and after two weeks in the hospital she got to come home. My sister had to stay for three consecutive weeks due to complications with pregnancy, infection, and her chemo treatments. she did not respond to the chemo as planned. the tumor originally measured 23cm by 20 cm, the cancer has spread to her liver, kidney and spleen. After 8 full courses of aggressive chemo the tumor shrunk to 6cm by 4cm, and a tumor remained on her liver. My brother was a 100% match for bone marrow transplant which she has received in april 2001. She finally hit remission and was doing great until now (august 2001) she has found a small lump on the same breast. We are wondering, "here we go again". she has a five year old daughter and the baby is heathy today at 11 months. If anyone is interested on having information on bone marrow transplantation I won't mind talking to you. I don't know much except watching what my sister and brother went through, if this may help anyone. Also, it would be nice to hear from other pregnant burkitts women for this is an extrememly rare condition when you are pregnant. also, I welcome any encouraging words.
Thank you for listening,
Ms. Anxiety

Iam a nurse but never knew anything about Burkitts until August 24, 2001. My daughter-in-law, Julie was just diagnosed. Julie and Michael graduated with honors in May, married in June and after less then two months of married life, Julie has been diagnosed with lymphoma. We are all praying and have hundreds of friends at their university praying. This web site has been a great help in the last two days. Reading the success stories has lifted my hopes. Julie and Mark, please pray for our Julie and Michael.
Mrs. R.

Mary---how is Julie doing...As you stated I knew nothing of Burkitts until my son was diagnosed in May 2001. Since then he has completed 4 high dose chemo treatments. The doctors were surprised that his tumor (Neck area) disappeared after the first dose of chemo. Originally Adam had a lump (lymph node) which did not respond to treatment. After two weeks he was diagnosed with Burkitts. His spinal fluid tested clean, but the doctors still gave chemo injections twice for each chemo treatment. Although originally Adam had traces of cancer in his bone marrow...the tests show no traces now. Now we have a decision to make...our Oncologist believes to follow out the cycle with 4 more high dose treatments of chemo. City of Hope (CA) is pushing more towards a BMT. Since Adam has no problems with the chemo I feel this may be the best...but I have yet to find any documentation which shows a BMT will produce better results. What type of treatment are they discussing for Julie? My prayers are with everybody...Hopefully everybody who reads this will put Adam in his prayers as well. Good-Luck to all....Joseph Woss

Hi My name is Christine and i have a goddaughter who is 5 1/2 years old who was just diagnosed with burkitts on Sept 11, 2001. I would appreciate it if anyone could let me know of a website were i could get more info on this type of lymphoma. My prayers go out to all who are dealing with this.

I am a 39 year old male, and was diagnosed with Burkitt's around the end of September 2000. I have a wife and a 5 year old son.

It was identified as stage 1A, with 2 lumps under my right arm. They measured 5.2 cm and 2.0 cm respectively.

I have undergone 3 cycles of the extremely aggressive CODOX - M treatment. The treatment was harsh and I was very sick, suffering terribly from nausea. The anti-nausea drugs did not work. I lost over 10 kg, but held up pretty well considering.

I have found the battle to exist on 2 fronts, the physical and the mental. The mental battle and the hospital stays have been particularly hard.Probably because before this I was so fit and active.

I am currently being re-staged. The scans are indicating that the lumps are now 1.95 cm, and 1.3 cm respectively, so I think I am responding to the treatment.

I expect further treatment yet to get to a result, hopefully not too much.

As far as side effects go, I have numb fingertips.
Does anyone have experience with this? Is it a permanent side effect or will it disappear over time?

Finally, I would like to hear from anyone on when the treatment is completed. What size will a lymph node end up at, given that there is often scaring and how is this judged. What criteria were achieved to say that remission was achieved?

Thanks
Leon

My boyfriend was just diagnosed with Burkitts. He just turned 43 on Sunday and had a tumour removed last week. His bone marrow test came back negative and his Cat Scan was fine. He is about to progress to aggressive chemo. I only hope he is able to get over this....

What is the recovery rate in your estimation?

numb fingers is a side affect from a drug called vinchristine.it will go away after treatment stops.my husband has burkitts and his fingers are the same way.he was diagnosed 10/16/01.currently undegoing magrath protocal,he has had 2 bone marrow biopsys.and both indicate substansial involvement.it is also in his stomache and in his spinal fluid.

Hi everyone

My boyfriends 5year old son was diagnosed with burkitt's lympoma in Ocotober. He went into the hospital because he was vomitting and had hives. They took him into surgery and discovered the tumor caused the bowel obstruction. He went through 2 treatments of chemo and was in remission for christmas. January 13 he went back to the hospital the tumor is back. Just as you think you've beat the hardest time of your life your world comes crashing down. The doctors are still doing test but the only thing we've heard from the doctor is that this doesn't look good for Brayden that the cancer came back so soon. I would like to know if anyone has failed remission before. What is the success rate after that. I would really like to hear someone stories that have gone through. I'm also having trouble finding a very defined site on burkitt's lympoma.
Any suggestions.

God bless everyone who has to go through this in their life. My prayers are with you.

Thanks

Trisha--the survival rate after a failed remission is very poor especially when the failure is quick. My daughter relapsed 3 months after remission and died 3 weeks later despite additional treatment. My prayers are with you.

Trisha,
My son was almost 11yo when he was dx with Burkitts stage111 he was on NHL BFM95 protocol, this was in July '99. I am not sure what prognosis is after a failed remission all I know is that my son was at high risk of relapse for 18months after he finished treatment. His oncologist told me if it was going to come back it would be within the first 4 months after completing chemo. My son is very lucky, he has been in remission now for 2 years. My heart goes out to you, this is the most dreadful thing a parent has to go through. I have been unable to find a very defined site on Burkitts also.Take care I will be thinking of you all

My brother was diagnosed with Burkitts three years ago - went through chemo and has been in remission for awhile and now he is in hospital with fluid in his lungs and they said it is not phnemonia and is waiting results from a biopsy - after extensive research on the net I was not able to find if the burkitts can move into your lungs or brain? Does anyone know of any site or has anyone been diagnosed with this stage of Burkitts? Please email me at LSTMAN@IMAXX.NET

My husband, Ken age 38, was diagnosed with Burkitt's on 9/12/2001. He had a grapefruit sized tumor on his liver, an entire lung was cancerous and it had hit 95% of his bone marrow. We are in Atlanta, so the regimine recommended was MEGA III. It consisted of 2 months of "Big Guns" chemo. Heavy chemo on days 1,2,3,8,15 and 21. They also did 4 methotrexate treatments in his spine. We went for restaging this month and either his remission was extremely short or he never actually went into remission. The cancer in the liver or lungs is gone, however there are patches of cancer in his bone marrow. We have been told that the only option now is for a bone marrow transplant. They have placed him on the IVAC regimine until a donor can be located. I know that God has been with us from the very beginning. I thank Him for each and every day that I have had my husband with me.

We heard about some new research being done by Dr. Ian McGrath around Burkitt's. Does anyone have more information or a contact number? It has something to do with the C-MYC gene and a PILL. Wouldn't that be GREAT???? Going through a bone marrow transplant has a long recovery period, so if there is another option out there we are very interested.

Please email me at crhea@dc.com

My thoughts and prayers go out to each of you and your loved ones that have been affected by this awful disease.

Cindy

Just to let anyone know who took interest to my concerns and questions about a failed remission, it was not a failed remission. The oncologist was under the impression that the pediatric surgeon had remove all the cancer from Brayden and gave him a clean up chemo. He is now under the impression that there were still cancer cells left in Brayden stomach and that is why it came back so fast. When they first diagnosed him with burkitt's he was in stage 11 and it has now progressed to stage 111. Brayden had to undergo another surgery for a perforated bowel. The doctors feel in time Brayden may be okay. It will be a long struggle for everybody. If there is anyone out their who has faced this situation, please tell if you had a positive outcome. I'm trying to stay positive so if the comments aren't good in the outcome I'd rather not hear them. Thanks and good luck to all. This is an awful thing and I feel it is unfair that any innocent person should have to go through this.

My thoughts and prayers go out to each and everyone of you.

If you have any info that I may find of value please email me at Trishawalters@sk.sympatico.ca

Hello Everyone,

I have posted in this forum a while ago, and unfortuneatly my wife Tina aged 31 years passed away peacefully on January 9th 2002. Myself & the children would just like to thank all of you who responded to my post.

Gerry--Sorry to hear your wife did not make it. Burkitt's is a terrible disease and certainly knows no age, race, or sex limits. You and your children will be in my prayers.

My heart goes out to all of you,my 8yrs old nephew has just been diagnosed as having Burkitts.Our family are devestated,it only started with a sore tummy and vomiting.we are trying to be positive,he has had a line put in ready for his chemo please pray for him Bethxx

I will pray for your nephew and his family as this will probably be the hardest time ever for all of you. Take one day at a time & remember to have fun with him as much as possible. If his treatment is high dose it can be very hard on him, but remember,children can also bounce back very quickly. Children are so amazing, just as soon as they are feeling good again after treatment they have fun and enjoy their time until treatment again. Children should never have to go through this horrible time at their most precious innocent time of their lives. But with love & support they are so very incredible. Find strength in your love for one another, take care, my thoughts and prayers are with you all.

Just to let everyone know who took interest in my questions about Burkitt's. Our special boy Brayden went to be with the angels on Feb 28,2002 at a tender age of 5yrs. My prayers are with anyone who has to go through this horrible time in their life.

Trisha

This message to Cindy who wrote in Jan. 2002. Did you ever find our or were able to contact Dr. Ian McGrath. I have also heard so much good about him. We are searching for a knowledgeable doctor on Burkitt's now. My son has been treated and is responding well, but there are some options we must consider. I pray your husband is doing well.

Maureen

This message is a very hard one to write. The first time I wrote into this network my husband, Ken was in the middle of his Burkitt's battle. After his second remission, Ken underwent an autologous bone marrow transplant. Did great through the transplant and for the first 40 or so days. However, on Friday, May 30, we were told that his cancer had returned. Less than 48 hours later Ken died on Saturday, June 1, 2002. Ken handled this disease, like many others, with the great dignity. I have thanked God many times for giving Ken a very peaceful and painless death. But now I would like to thank Him in cyberspace.

Lord Jesus, thank you for all the blessing you have given me and my family. I thank you for the last 16 years with my wonderful husband, Ken. I thank you for my two beautiful children, Kristy and Kenny. Lord I thank you for using Ken's illness for your Glory. Thank you for the peace you gave him during his last 48 hours on this earth. I personally have seen many people touched by his great faith during the last 10 months. Thank you Jesus for being by my side and helping me through today and the difficult days ahead. Lord, please bless the many families that have been stricken with this disease. Give them strength and courage. I pray that each of them will draw closer to You.

Thank you for forgiving me of my many sins and thank you for my salvation. Amen

Dear Cindy,

I was moved by your message. I am sorry that you have had to go through this. I know by reading what you wrote that you are a believer and one day you will see him again.
My 28 yo brother has been such an inspiration. I want to share with you how he has already seen a positive side to Burkitts.
He was able to finally go to church recently. He had stayed away from crowds during treatment. He was in a Sunday School class and the leader changed plans that morning. The group leader had prepared a message to preach on but felt that God was leading him to do something different. He felt led to open the room up for discussion and testimony.
The leader asked one of the men in the room to share their testimony. This fellow spoke on the prayer of Jabez and how it changed his life. Then the leader looked towards my brother, Dan. Dan and his wife, Rachael, told the group about his battle with cancer. Dan and Rachael became teary eyed as they spoke about how they had become closer during this time and how they felt closer to God. Dan then said that had it not been for the cancer he may not be the same person. He said he was actually thankful for the cancer.
After Dan finished speaking another guy began to speak. This fellow was moved by Dan and Rachael's situation. He said that he believes there was a reason why they were there that day. He said that there were many Sundays that he had trouble getting out of bed to come to church. He was moved that Dan could be thankful for the cancer. Another guy brought up about how easy it is for people to complain about everyday life. To hear about Dan and Rachael makes people realize how fortunate they are. The leader of the group became teary eyed as well.
Dan and Rachael have found opportunity to advance the Kingdom of God. God is awesome and he is in control. They have put their lives into God's hands.
Dan found out on Aug 15th that he still has a trace of cancer even though he has finished the regimen he was on. He is keeping a positive attitude.
I hope that you can find some comfort in what God is doing with my brother. Please feel free to e-mail me.

Amy :)

My name is Michelle and I am currently at a hosptial in las vegas waiting for the nerosurgeon to put a brain shunt in. i am 27 yrs.old and was diagnosed with Burkitts about 1 week ago. I have 3 small children at home and am scared to death to start my chemo tomorrow. I have a large tumor in my neck and small smaller nodes in my pelvis and stomach. I also had NHL in my tonsil. I found it very helpful reading others past experiences.

Hi Michelle:

No one likes to be on this site and its good that you can talk about being afraid. This is a great place to talk about the problems and fears of hearing the words "Buriktt's" from your doctor. Mostly you will hear encouraging stories here but there is always the chance of failure with this disease. Hang in - hope that we can be of encouragement to you - all of us have been there and all of us live with Burkitt's every day.

Paul

Michelle

set yourself some goals....with each round of chemo say that you want to finish it on a certain date and that you want all your chemo finished by a certain date..set goals and mark them off...don't stop living your life..plan for things to do in 6 months time, like going on a holiday with the family. It is ok to be scared. It is ok to cry, it is ok to laugh too, it is ok to hug and be hugged. It is ok to talk about what you are feeling or hurting. I was told that battling cancer is 50% mental..stay positive. You will have your bad days and you will have your good days. but for each day you have that is bad, it will soon be over and tomorrow is another day. I'm yet to hear of time stopping, even in Hollywood. Time keeps moving on. You may feel crap today, but tomorrow you could feel on top of the world. But good luck..and reading this site you can see that a lot of people have battle burkitts and come out the other side a bigger and better person for the experiences.

this is michelle again, today is a bad day. I really want to go home I miss my kids and husband more than i can say. thanks for the words of encourgement, right now I just want to be home. I hate being stuck in a hospital bed all day feeling like crap, as did all of you. I can't imagine another 6 monthes of this when its only been a week. I'll keep checking for more responses when I get a chance. Again, thanks for writing back.

Michelle

chemo for burkitts normally doesn't last 6 months, usually only 3 - 4 months with breaks inbetween to allow your body time to recover (and your emotional/ mental wellbeing) If you think that is ages away, well just think that christmas was 8 months ago, and it only seem like yesterday handing over the presents and ripping off the wrapping paper. We all hated being stuck in a bed all day. I don't remember the number of times I was soooo bored I used to just press the buttons on the IV machine thingie that controlled the rate of fluids/ chemo into me. Just to ease the boredom. My sister gave me a game boy advance which I played for hours and hours or I even did kids puzzle books like crosswords of findawords (regressed to my childhood, but kept the mind active). I even read trashy gossip magazines (Australian versions of the USA national enquirer) to ease the boredom. You'll find that yes you do go through boredom periods whilst in hospital, especially if you are too sick. I've heard of other patients crochetting or knitting to while away the time also. I went for wanders around my ward (when I was allowed - immune system permitting) and met a few of the other patients (the younger patients tended to gravitate towards eachother - I was the 2nd youngest getting treatment at my ward at 29) - the average age was mid - late 50's, so we formed like a social group and would go down to the communial ward kitchen and gossip and bitch for hours and let off some serious steam. Afterall cancer patients tend to go through the same thing. But remember your family is only a fone call away, and I can bet they are missing you just as much if not more. Although chances are they are trying it on with your husband whilst you are away. 'Just stay up 10 minutes more dad' is what they'll be saying. What mum (or in america's case mom) doesn't know won't hurt her. But remember this will all be over by Xmas and you'll look back and think, gawd that time flew by. My chemo was 16 - 20 months ago and it only seems like yesterday. You'll read other patients contribute here who had chemo 20+ years ago and they can still remember vividly. Just remember that tomorrow is another day closer to the end.

michelle,

I feel for ya. Maybe you could learn to crochet or do needlepoint. I learned both waiting in the hospital. Maybe you could borrow the peds unit's video games and impress your kids with your expertise.

I'm in Idaho but will be in Vegas this weekend, if you're really bored, I'll stop in. Let me know.

Don't follow Brent's example and play with the IV pumps (BAD Brent!!), I'm a nurse and that is a dangerous thing to play with. I know it's easy for me to say but don't think of your treatment in terms of months--shoot for one day at a time. If you feel up to it, yoga DVD's are wonderful and help to relax and defuse stress--really good for your immune system. Pray,pray,pray it's good for your soul. Take care and God bless.
Faith
PS--it helped my son to chomp on hard candy with his cytoxan, the taste/smell was better and if the saline bothers you when they push it, ask for preservative free. I'll pray for you.

Michelle/ faith

sorry I should have mentioned that each time I did play with the IV drip I invariably set the machine's alarm off which set the nurse's racing in and I got the inevitable level of abuse from my nurse at the time and the possible life threatening ramifications. Kept me amused, but yes very dangerous. One thing I did learn was that if I broke it I also knew how to fix it, but it again is not recommended as you can kinda sorta adjust your machine and overdose on chemo which is a bad thing. So my apologies for not clarifying the issue.

Hi Michelle:

I hear what you are saying. One thing that most of us went through in our treatment was hating the hospital, even though we knew that they were trying their best to help us. I was in for 5 months, but I had multiple problems including paraplygia (lost use of my legs). I hated the food - perhaps its better in Las Vegas, but I wouldn't bet on it (sorry for the pun!)I got to hate hearing the meal wagon coming down the hall and used to have a bet with the nurses on how terrible it would be. Which brings me to my point - no matter how bad things get - keep your sense of humour. Even though this is a terrible disease the human spirit has an amazing capacity to survive and triumph over this. You will have days when you will feel so down that you don't know how you will keep going -but make sure that you have up days too. Focus on what you have left, not on what you have lost.

Hang in - stay cool

Paul

hey everyone! its michelle. I had a really bad morning again, I talked to my husband and I could hear my kids playing in the background. He brought the kids up awhile ago and I am feeling a little better. My 1 yr. old wouldn't come to me at first and that really bothered me. the doct came in and let me off my IV's for the day. I feel like I was let out of jail. I think when my mom comes in will go visit the kids in the peds oncology. it might encourage me to stop crying everyday seeing if they can fight this I can too.
My wbc are still good so I am hoping to go home for a few days next week. I wish they could treat you at home for this but they wouldn't be able to take your blood at 4:00 in the morning!! Anyway
I probley already missed you Faith but if not I am in Sunrise Hospital Rm.366. thanks Brent for the Iv usage but my mother already suggested I didn't play with it. I will be so happy when I am on this website in a yr. hopefully over this crap. we'll I will talk to you all later.

Hi Michelle,

I totally understand your feelings of being scared and wanting to be with your family, I went through the same thing when I was diagnosed in July of 2002. I don't know what was worse, the boredom of just sitting in bed all day or the actual meals that they would serve you :)
Paul is absolutely right, you need to keep your spirits up and your sense of humor. If you accept the fact that you will have bad days and deal with your treatments one day at a time, you will be done before you know it!
I have been in remission for 22 months and it truely feels like I was just starting my treatments yesterday.
Keep plugging away and hang in there, I will pray for you!

HI EVERYONE JUST HAVE A QUESTION FOR ANYONE WHOSE
HAD BURKITTS WERE YOU DIAGNOSED WITH BURKITT-LIKE
OR JUSE BURKITTS MY BIOPSY REPORT CAME BACK
DIFFUSE LG CELL LYMPHOMA AND BURKITT-LIKE LYMPHOMA
I WANT TO MAKE SURE I NEED TO BE IN THE HOSPITAL
FOR 6 MONTHS FOR THE RIGHT TREATMENT. WHENEVER I
ASK THE DOCT HE TELLS ME THIS IS PROTOCALL FOR
TREATMENT AND BLOWS ME OFF. ANYWAY I'VE BEEN
REALLY SICK FOR 3 DAYS MY WBC'S WENT DOWN TO
NOTHING AND IVE BEEN THROWING UP AND UNABLE TO
EAT. I AM FEELING A LITTLE BETTER TODAY. PLEASE
RESPOND TO MY QUESTION ASAP I AM TRYING TO FIGURE
OUT WHATS GOING ON BEFORE I GO HOME NEXT WEEK.
THA

Hi Michelle
My boyfriend was diagnosed with burkitt-like lymp. It was said that it is not so aggressive as burkitt, but the treatment is the same (magrath protocol). The whole treatment is about 4-5 months but my bf every 3 weeks go home for 2 weeks (depends on his WBC). What else would u like to know?
Marga

Michelle

I went through McGrath protocol (Codox M by 2 and IVAC by 2). Codox M was about 15 days of treatment (with a 2 day break at days 8 and 9) and then about a week's recovery and build up of WBC, whilst IVAC was 6 or 7 days with about 7 days rest afterwards. WBC to goto 0 is perfectly normal. Neutrophil count will also drop majorly, as will Platelets and Haemoglobin (red blood cells). WBC normally goto 0 as does Neutrophils (ie your immune system and it's fighting mechanism). They can stimulate the WBC and neutrophil production by giving you a daily injection of Filgrastin or GCSF (known by 2 names). That stimulates white cell production. And to combat the Haemoglobin and platelets they can give you a red blood transfusion as part of your chemo regime and intragam also which can bump up your counts. To give you some idea. when i was first diagnosed I lost 24kgs in 21 days. went from 102kgs of muscle to 78kgs of bone. I just laughed about it and thought of all the money I saved by avoiding weight watchers. I forced myself to eat as I knew that if my weight got too low (ie around 50kgs) they would consider giving me vitamins and liquified food through my catheter, which I wanted to avoid. My weight didn't drop then below 78kgs for the rest of my chemo. And unfortunately for me, after the chemo finished, I put back on 20kgs in 4 weeks (gotta love mum's home cooking). One suggestion. If you are in a cancer ward, ask the nurses. based on their experiences, does what the doctor tell you sound right? they would have given burkitts treatments before hopefully and they can check the treatment protocols and their knowledge and experience. Granted they may not be oncologists but they have some experience on what patients are going through interms of side effects and treatment programmes. Wouldnt hurt to voice your concerns to the nurses as they are in a better position to speak to the oncologist. I know that when I wanted something or to discuss something I just went straight to the nurses. They knew more of the ward gossip than the doctors ever did. And as they worked in the ward daily they knew me a hellva lot better and how I was feeling than the oncologist ever did, so I felt more comfortable chatting to them and they conveyed that to the oncologist.

thanks for your responces i am not sure what
treatment i am on i amsupposed to be at the
hospital for 3 weeks then go home for 3 days. i
have a brain shunt and also received rituxin. so
far my lump in my neck is almost completley gone
and thats the only thing that keeps me going. is
your boyfrind in remission? i guess the
burkitt-like tmor was in my tonsil, which was
removed and the diffuse lg, b cell was in my neck
but i still have to be treated for

Hello everyone. I am very happy that I found this website. My brother was diagnosed with Burkitts Lymphoma in February 2004,which was stage 4 in his Bone marrow, 100%. He went through the chemo treatments, like he was taking candy. The chemo treatments comsisted of 6 rounds, at 96 hrs each round. Affter the 4th round the doctors said that he is pretty much in remission, after his sixth round he was in complete remission with everything looking up for him. Two weeks after the doctors said he was in complete remission and he was soooo happy. On July 2, 2004, my brother Thomas started to get bad headaches and vomitting. He went to the hospital and tested him for almost everything, and everythign was okay, until they decided they wanted to do a spinal tap. That is when the BAD news came upon us, the doctors said he had the urkitts back and it was showing up in his spinal column, which more or less meant in his brain as well. The doctor said he had 2 choices, #1 not to fight it, and live off morphine until the end, which he claims most people do or #2 try to fight it. My brother said "I love life, I love living, lets start the treatments", he said if I am dying I am not going to go out without a fight. He had was always so happy with life and everything around him. July 6th, Thomas was diagnosed with Burkitts, 2 weeks after remission, July 7th, he had his first round of chemo in his spine, July 19th he had his 38th birthday, and July 31st he died. That is the absolute hardest thing I think I will go through. I was there holding his hand for his last breath, and hope that he knows his family was there. Anyone with anything similar or would like to talk about it, please email me at BarbaraDeWolfe@msn.com

Dear Michelle,

I did miss you in Vegas, but I contributed to your city's revenue in the casinos ):
I hope that all is well on your end. When my son was in the hospital getting his chemo, he smelled different and it really bothered me--odd thing to fixate on, I know. What I'm getting at is that you look different, smell different and are in a different setting. Maybe you could try putting on your own robe or sweater, use your own fragrances and soap and your little one would feel better.
I know, believe me I know, how hard this must be on your whole family--I'm praying for you all. Keep going one day at a time. We just had Zach's one year anniversary of his diagnosis. Yikes, it seems like yesterday that we were there, but if you could see him now, you'd never guess he was SOOO sick only one year ago. Thank God.
faith
PS--did you amze your kids with your video game skills?

HI EVERYBODY! JUST A QUICK NOTE TO SAY HI AND TELL
EVERYONE I AM FEELING BETTER OFCOURSE I AM NOW ON
ZOLOFT. BUT ANYWAY MY COUNTS ARE GOING UP AND I
SHOULD BE GOING HOME FOR A FEW DAYS AND I AM SO
EXCITED. I DO WEAR MY OWN CLOTHES AND SMELLS BUT
MY SON IS JUST AT THAT AGE WHERE EVERYONE IS
STRANGE. I THINK ONCE I AM HOME HE WILL BE BETTER.
I HOPE WVERYONE IS DOING WELL AND I WILL BE BACK
FOR ROUND 2 NEXT WEEK. 4-7 TREATMENTS TO GO AND I
HOPE I CAN PUT THIS ALL BEHIND ME. ANYONE WHOSE
BEEN THROUGH THIS PLEASE EMAIL ME AT
igot3crazykids@aol.co
m

hi all, my name is emman,am completely relieved with mixed emotions to finally see this website about burkitts lymphona. I have a lump on my neck and abdomen(gone after one chemo round). I was given 8 day-rest period.now am experiencing vomitting/nauseating, I lost 7 kgs after two rounds of chemo.am extremely worried again as i can feel the lump on same spot again(left side of the neck) am scheduled to go back to the ward this monday,23/8 to finish 2 more rounds(CODOX M & IVAC). I lost my appetite and can not take in food that much. I got three kids, ages 8, 5 & 3.

Please anyone to share same experience as am really down and want to live for my kids and family.

To Michelle, thanks indeed for coming out sharing your side. given your courage, i can finish as well the fight against THIS DREADED AND AGRRESSIVE LYMPHOMA DISEASE.

yours sincerely
Emman, 35 years old
Sydney Australia

Emann

If it makes you feel any better....I lost 25kgs in 21 days, and that was just through the first round of codox-m...ohhh how I wish I could lose some of that kgs..even just a little bit..as I've put it all back on and a little bit more.

if you want to email me directly in Melbourne (trnstrns@hotmail.com)

brent

G'Day Emann:

No you are not alone - in fact I don't know of anyone going through chemo who didn't hate the idea of food - especially hospital food - which my Australian friends tell me is not any better down under than in Canada. I was "lucky" in that I got so bad that I ended up in ICU with a tracheotomy and being fed through a tube (which I pulled out 8 times and really got the nurses annoyed). As Brent says it does come back - I weighed 200 pounds going into my fight with Burkitt's (I know you use metric in Oz and my Tasmanian son in law gets crazy when I don't use metric) and when I finished chemo I was 160 lbs on a 6 foot frame. I have now put a lot back on but it is a "normal" thing - if anything is normal with Burkitt's. One thing I have learned from this site is that there are similar things that all Burkitt's patients go through and then there are unique things that happen to each person. Everyone wants to live for their families and that is one great incentive to keep on fighting. Mental state is everything.

Hang in - stay focussed

Paul

My husband just turned 32. 4 months ago he was Dx with burkitts lymphoma. He had it in his sinuses, lining epidural brain & spinal Little by heart and Kidneys & ? where else. He has an Ommaya resior for treatments to Spinal fluid as well a a porta cath. He started with radiation which left him feeling so much better since he had lived several weeks in dehabilitating pain prior to Dx which took a while. Chemo started there after. He had his ups and downs. He has three week cycles and always seems to end up in the hospital with low blood counts. Last cycle #4 left him experiencing alot of what we thought were reoccurences to the beginning but the doctors couldn't figure it out but with major antibotic it went away just as mysteriously as it appeared. He got extra week inbetween cycles but now we are in cycle five. He doesn't seem to be bouncing back as well as he has in the previous cycles. This worries me some. I know we are half way threw and so far a major improvement from the beginning but I am not sure. Our one year wedding anniversary is tomorrow. We have been together for 7 years prior. We do have a child who is almost 9. if any one can help wether suggestions or anything else they can think of I would greatly appreciate it.

shell

think of the chemo like a 12 round boxing match...each time you get hit it takes that little bit longer to get back up again, but eventually you get back up and continue fighting. same principle with burkitts. Will take him just that little bit longer to get back up after each treatment but he has the determination to fight on. Burkitts is not a sprint, but rather a middle distance race. He will get more tired and run down and that's when he'll really need your love and support to keep pushing him to fight on for another round until he gives the final knockout punch in the final round and wins the battle. Burkitts is not about winning battles, it is about winning the war. Full of cliches, but true.

A VERY IMPORTANT PERSON IN MY LIFE WAS DIAGNOSED WITH BERKITT'S...JASON, I LOVE YOU BABY. HURRY UP AND RECOVER.

I was diagnossed with Burkitt's Lymphoma February 14, 2006. After a large mass in my neck continued to grow, I had it surgically removed, diagnosed staged and a treatment plan devised. I am currently on 8 rounds of chemo with a radical C-VAD treatment - which is similiar to a CHOP regiman in drugs but more radical in treatment.

I live in New York and am fortunate to have the advancements of some of the best oncologists and cancer protacol for Burkitt's.

Four things are severly new and important to the treatment of this disease in addition to an early detection and diligence in finding the best treatment and resources.

1) The use of Rituxan - A relatively new drug new to the market after clinical trial approval in 2004 that is now standard for Burkitt's and kicks the hell out of cancer cells in tandem with Cytoxin and Methotrexate among others.

2) Incredibly strong naseau medicince such as Zofran.

3) A STRONG regiman of spinal injection chemotherapy drugs during your treatment to take down the chances of reoccurance after remission to the brain from 30% to less than 5% and:

4) Neupogen to clott the colony of white blood cells between your treatments for a quicker recovery to your white blood cell count. This will result in a smaller window between treatments. The closer your body can take the treatments without failure to other organs, the better chances of a cure/remission.

MOST OF ALL a POSSITIVE attitude. Realize that you are your OWN statistics. The healthier you are with your heart (a radical treatment for a cure requires a strong heart to withstand the toxicity of the drugs and the length of some of the drips), your diet, your rest and your mental state to beat this thing - the better. Only YOU control that. Support comes from everywhere, your family, your friends, your work, your community, your prayer circles and most of all your higher power - God, in my case - but everyone has a diety that they need to rely on for comfort and support during times like these. I'm tickled so far with my doctors and nurses and my reaction to the treatment on my second round. Getting out on the other side of this is the GOAL.

ALWAYS remain EDUCATED and learn this disease like you were passing your LSAT's. You are 100% of the solution and you CAN do this. I am telling myself that daily and with GOD's help (believe me he puts his help in the form of other loving supporting friends and family each and every day) I KNOW I can do this. If I can be of any support to ANYONE out there, please write and I'll do my best to help. The everlasting blessing of this disease, if there is one, is the gift of giving back so that others survive what has been so brutally put before them.


Tom V.

Dear Anyone,
My sister's little boy Oskar complianed of a very sore tummy, and every time he ate he fell to the floor holding his tummy,(mummy there is a monster in my tummy) for 3 weeks doctors told my sister that he was constipated! On Monday the 14th August she demanded an ultra sound and found a tumor in the small intestine and was soon diagnosed with Burkitts disease. It has moved quickly to both kidneys and he has already stated chemo. My sister has had cancer twice now Hodgkins disease and is only 34 years old. She was devasted as you can only imagine. She is saying maybe she gave this to Oskar- she was diadnosed with Hodkins for the second time when Oskar was 5 months. Does anyone know if this is a direct relation - surely life cannot be that cruel that the cards are dealt so cruely to one family? Please help me - i am so worried - i am worried dor all of them. Please share any stories you may know that may lift my spirits. From what i have read it appears that it can be cured although it is quite aggressive. So sad.

My brother was diagnosed with burkitts when he was 5 years old. My mother thought that he was breathing funny and acting very strange. She took him to the doctor several times and they told her that she had a problem and that at most he had a cold because he was talking funny as well. He stopped breathing in the middle of the night. They flew him out of town with a hole in his throat to breath when they found a tumor the size of a baseball in the back of his throat. He is now 33 years old with no signs of the disease!!!!! He beat it! I was 8 when it all happened and I remember the trips for chemo and the fear we all had. I aslo remember his graduation from high school, college, and wedding. Have faith and pray for this disease to be lifted from Oskar. Pray for your sister to have stregnth. I will.

Hi, my name is Ryan. I was recently diagonsed with Burkitts in July. I have completed my first round of chemo, and it was tough. Of course I don't need to tell anyone who has experienced it how hard it is. My wife and I have been hearing from many friends and loved ones about homeopahtic healing. I was wondering if anyone has, used this form treatment to either help with their chemo or as an alternative. I would really appreciate anyone with experience in this write me back. My e-mail address is mrpeakedaddy@yahoo.com or my wifes is missrini@yahoo.com
Thank you and God bless.

Hi Ryan, I hope you are feeling a bit better. I never tried any homeopathic healing, so I can't tell you if it works or not. Let us know if you try it, but I wouldn't do it with out the chemo. This cancer doubles in size like every 16 - 18 hours to my understanding.
Email me or call if you want, I know that when I went through this that it helped ALOT to be able to talk with someone that want through the same thing. No one else can really understand what this can do to you.
Steve

Dear Jodi, Where can i go to find more information regarding Burkitt's disease? We live in Australia and apparently there is only a few cases the doctor's were saying with kids in Australia- seems strange and very scarely. Oskar is having a lot of treatment and a lumbar puncture every 10 days. He is taking it well. Although i was shocked at how unwell he is already looking- seems very early. I am very interested to read up about what the chances on it coming back? Do you know ? Please let me know. Also i really appreciate any information sites you can recommend.
Sandra

hi..i am Maha, my uncle has diagnosed with Burkitts lymphoma. he diagnosed when he is at stage 4.Lymphoma is diagnosed in a biopsy report..During the period of diagnosis his both upper and lower limbs got paralysed.. Doctors recommended chemotherapy, now chemo is over bt lymphoma isn't cure yet...nd may b doctors sugguests radio therapy now..
Can any one here help me..so he can cure from it...

I am a 67 year old woman and I was diagnosed with Burkitts lymphoma 3 years ago I have check ups every 6 months. I had chemo for 5 days in the hospital and then home for three weeks. I went through this 4 times. I wanted to live and I would have gone through any treatment that they prescribed. It was well worth it. I would say to anyone to do exactly what the doctors tell you. Dont be afraid the nurses are trained to help you be comfortable.

My dad was just diagnosed with Burkitts (he is 75). He had had a tumor removed from his small intestine a couple of weeks ago and the surgery went well but the diagnosis threw us for a loop. I know the intensive chemo is the way to go but he cannot use one of the drugs in the mix due to having had a heart attack many years ago. Does anyone have recommendations of doctors in the NY/NJ area who are Burkitts specialists? Any info would be so helpful at this time.

Ilene,

I'm sorry about your dad's illness. This disease is so rare that it would be tough to find a Burkitt's specialist. I would recommend that you contact Sloan-Kettering. Many local oncologists consult with Sloan's doctors, who are familiar with the disease and the most current treatment options. I wish all the best for you and your dad.

My Dad has been diagnosed with Burkitts Lymphoma. He is 61. Does anyone have any survivor stories. Please let me know. He is going to The Cancer Treatment Center of America in Phillidelphia Tomorrow. Can anyone tell me if this is a good hospital. Also i have been reading Survivor stories and most of them are stories of very young people, and also there symptoms were different from my dads. My dads started in his bone marrow and so far is not anywhere else. Has anyone elses started this way.

April My husband Brian's story is on the Wall of Hope at Mass General Hospital. He was 59 at diagnosis, now 68 and doing great, retired and enjoying our grandchildren. I don't know about the hospital in Philly, but we do know it is important to be in a large cancer certer for treatment.Feel free to email us at louandbrian1@comcast.net read his story at:
http://www.massgeneral.org/cancer/about/environment/wallofhope/borourke.asp

Dear All,

I was diagnosed with Burkitt's Lymphoma early April of 2007. Went through R-Hyper-CVAD/ARA-C for 6 months. Thanks to God, my family and my doctor, I am now in complete remission and getting ready to re-start my job.

My suggestion to all of you with this desease is to keep God in your heart all the time and not to give up hope. Everything in life happens for a purpose.

God bless you.

My son Rj was diagnosed with Burkitt's lymphoma on Nov.14,2007. He was complaining of on and off stomach ache and his doctor told us that he only had gastritis but after he vomitted a lot we took him to ER and that's how they found out from his CAT scan.He will have his 2nd round of chemo and I hope he will do well this time because he had a bad mucositis the first round of chemo.To all those who are suffering to this condition, keep your faith in God... He is always there for us.Miracles do happen because Rj's tumor had gone down to more than 50% before he even had his chemo.