Burkitts Lymphoma

Hi again Gem22 and well done navigating across to this corner of the Community.

As you know Burkitt lymphoma is rather rare and with this the lack of people to connect with but we have had a few folks post over the years with this diagnosis so let’s look for them to pick up on your post.

You can also put Burkitts Lymphoma into the search  tool near the top of the page, select ‘anywhere’ and this will bring up the older posts and as always you can’t hit reply to see if the folks are still looking in.

You may want check out the Lymphoma Action website. Lymphoma Action is the UKs only Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where they try and link people up with someone who has walked the same treatment journey with the same type of NHL.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

I do understand the challenges of living with and being treated for a rare type of NHL - you can see my journey by hitting my community name.

Everything will feel so overwhelming but you need to trust in your partners clinical team and keep focused on the goal of getting through this.

Always around to answer questions as best as I can.

Hi Gem22 , Jean (Gypsy rover ) , I was diagnosed with NHL , Burkitt's lymphoma May last year , I was an inpatient for my treatment , I spent 16 weeks in hospital , I was started off on steroids before my biopsy results came back , once I was diagnosed I was moved 20 miles away to my nearest hospital that could treat me , my chemo regime was CODOX-M & R-IVAC , I had 2 cycles of each with week/weeks in-between to let my body recover from the treatment before the next cycle , if I can be of any help to you just ask , just remember we're all different and different to how we take to our treatment Xx

Hi Jean.

Thank you so much for getting in touch. Andy has been in hospital for a month now and is undergoing the same regime. He is also having immunotherapy and chemo into his spine. So far there has been lots of ups and downs and uncertainty, however we are very fortunate that our local hospital has a big haematology clinic, so at least I can be with him as often as possible. 
How are you feeling now Jean? 
Thanks again for the message,

Gem xx

Morning Gem not that great with technology , so forgive me... I had Elaine my wee sis visiting 6 times a week I was in the Queen Elizabeth Hospital in Glasgow.. team were amazing there.. my chemo was through a PICC line as my chemo was attached to my spine so to close to do it that way , also a Hickman line but couldn't lie on my back to get it in , but if you need a chat just call Xx

Hi Jean, Andy also has a PICC line and every other week he has a lumbar Punture to administer chemo into his spine. 
How are you now Jean? Xx

Hi Gem , May went into hospital , September discharged , PET Scan on October , full remission , but after that you then have your recovery journey , I've got good and bad days , everyone is different same as the way they react to the chemo , I've got peripheral neuropathy in my hands , nerve damage on my right leg that comes and goes , emotions are sometimes on a rollercoaster , but if you need someone I can be here for you , Burkitt's lymphoma is very rare and not many people have had it , as Elaine would say , I don't do things simple , I've gotta do the whole hog

25 years remission for me. I think I was number 43 in the uk so yes it’s very rare. Ivac and codex m protocols. I found the methotrexate toughest. I somehow managed to stay home for a lot of the treatment but also has a couple of infections and taken in for those but overall after the chemo cycles I picked up fairly quickly afterwards

Hiya , I've been in remission since October of last year , same chemo treatment but I had a rigor episode and several bouts of sepsis which was very hard going and before I got out I ended up with a urine infection so another 2 weeks added onto my inpatient stay , 16 weeks in total , I'm doing ok apart from my recovery days 

Hi, coincidentally I got a bladder infection at the end of my treatment cycle and spent another 8 or so days in isolation. I was sent home on a Friday, started to feel that I needed a transfusion and went back in on the Monday and started shivering after the transfusion… stupidly tried to hide this. By the Wednesday they’d found the right anti bios and I felt 100% better. I was told they knew I’d be back as my immunity was pretty non existent when I left but at least I got a weekend at home. 

I think that I had check up pretty regularly once in remission but after a year or so they stopped and at that point felt some unease. The nhs had looked after me so well and psychologically probably reassured to have the checks up. A few months after I’d stopped checking for lumps and bumps myself. 
I hope you are progressing well and building up . I stupidly rushed back to work as soon as able , even curtailing a phased return and in hindsight I probably needed more time to get head round what had happened in such s short time. My treatment was over the summer months, started to go back to work Christmas time but I think I wasn’t truly right in head and string enough to the following Easter. 

Hi Gem , I was diagnosed with Burkitt's lymphoma last June , I had CODOX-M & R-IVAC For my treatment , it is a rare lymphoma not much is known about it , I spent 16 weeks in hospital getting my treatment as after each cycle your immune system drops and your in for any infection , I'm sure your Haematology ward will keep you right ,