My son was diagnosed with rhabdosarcoma wrong dx burkitts lymphoma His mass was growing around his fermur artery. He went to emerg rooms with hip pain, back pain, leg pain got ignored everywhere. When his right leg started to swell and in extreme pain, finally got addmitted to hospital, ultrasound showed a blood clot from his upper thigh to knee. Took another 3 weeks for biopsy results, Mass inopereratable.12-7 cm. the doctors just keep saying hes COMPLICATED I would like anyone who knows anything about this rare cancer to please write me scared and frustrated.
Hi Sleigh, welcome to this site. I don't know anything about this type of cancer, but I'm sure there will be someone on here who knows something of it. I hope you get the support you so require. Let me know how things go with your son will you. Thinking of you, Christine xx
Welcome to the club no-one wants to join. It is very scary when you are waiting for results and I know when I first heard I had cancer I just stopped breathing. But somehow we get over the shock and it becomes a part of our life. I think it is especially hard for partners/parents/offspring to have to watch a loved one suffer.
If no-one comes back to you, you could have a look under "people / cancer type / Lymphona, non-hodgkin" through the link at the top of this page and if you read people's profiles you may see some who have burkitts lymphoma . If you send them a "pm" (private message through their profile page) someone may come back to you. Not everyone reads the forums/blogs but this way you will be able to contact people direct.
I was diagnosed with a burkitts NHL in my stomach back in Feb it came as a big shock as i was 29 years old. It took over a month for the hospital to decide with type of lymphoma i had. It was quite a stressful time as the treatment was very different from diffuse large b cell to burkitts. In the end it turned out to be burkitts so i had 2 chemo regimes of r-cotex-m and 2 chemo regimes of r-ivac. The chemo for burkitts is a very intensive treatment. Part of the treatment was to have 8 intratheacal injections, burkitts can get into your nervous system and this stops this. The chemo treatment for burkitts i recieved was all done as an in-patient i spent 11 weeks in hospital in total. I had a hickman line put in, you cant have this type of chemo through a canuler in your arm, however this was a god send as i'm not to fond of needles. The r-cotex-m regimes were 18 days in length and the i-vac 7. I found the ivac worse it made me very sick and i didnt really eat for 5 days. Some days i was totally out of it and slept all day. 4 days before the end of my final chemo i got an infection in my hickman line which was then removed. To finish my treatment i had a central line put in my neck. The four regimes took about 12 weeks in total. I was given the all clear at the start of june and i returned to work at the start of august. I was told that burkitts is a very aggressive cancer but it does react very well to treatment. If you want any more information let me know, i am more than happy to share my experiences of this horrible disease with you. I hope everything works out for your son.
Hi sorry you had to go through this so young to. How big was your tumor and did they do surgery? It took over a month to dx my son to. Do you have to have routine ct scans and how do they decide the cancer is totally gone? I know so many questions but it is hard to get an answer from doctors. Your going back to work im happy you feel that well. It is nice to find someone with some knowledge and a good outcome Take care.
Hi Gareth , I came across this while reading different sites what you said above , oh so true I was diagnosed with Burkitt's lymphoma in June & had same treatment & PET Scan in October & I was clear , I went into hospital had a biopsy when it came back 10 days later I was transferred to another hospital the next morning to start my chemo , I'm 1 lucky lady to be here
