Hello, my husband was recently diagnosed with Burkitt’s lymphoma which is something we never even heard off before now… After the initial shock and worry, we are trying to figure out what this will mean for us going forward. Has anyone gone through this? Also, he will start CODOX- M chemo protocol. Can anyone give me some advice on what to expect, what side effects he may have and how I can support him better? The first cycle will be done in hospital, should I stay there with him during the treatment? What items would be useful to have during these chemo cycles? I appreciate anyone taking the time to answer and I wish everyone lots of health 
Thank you!
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Hi @Lina and a warm welcome to the forum.
I’m sorry to hear about your husband’s diagnosis.
I’m not at all surprised that you had never heard of it.
My diagnosis was Myelofibrosis a different cancer and one that I had never heard of.
I’m pretty sure that many of us on the forum were exactly the same.
I’m sure there will be others who will share experiences of your husband’s cancer.
In the meantime this link might help
You can also reach out to the @BloodCancerUK-SupportTeam with specific questions.
None of us can offer medical advice but there’s always a lot of support on the forum.
Regarding the question about your husband having first cycle in hospital this is pretty normal as they need to closely monitor him.
It’s worth asking your clinical team about being with your husband or not as different hospitals have different preferences.
Take care
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Hi Lina. I am currently active on this message board as my mum has Leukemia but I just saw your post pop up and had to reply. My husband has been in remission from Burkitt Lymphoma for three years now. You won’t find many people to chat to about this as it only affects around 200 people in the UK a year.
He was 33 when diagnosed and went through the R-Codox-M / R-IVAC chemo regime. It is a very intensive regime so he had to spend every cycle in hospital, he did 4 chemo cycles (two of each) and was in remission at the halfway point. It is a very aggressive cancer but responds very well to treatment. I won’t lie, the chemo was very tough and he got very weak but you wouldn’t know it now (he is on the treadmill as I speak). I would say the mucositis was the most painful bit for him so maybe do some research about the best way to avoid this. Reach out to me on here at any time, I have helped a lot of other Burkitt partners through this. There are two Facebook groups as well which are very helpful! Sending lots of love x
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I also created a list of best things to take into hospital on Reddit. I will paste it on here:
Ear plugs (hospitals are noisy)
Eye mask (hospitals are bright)
Their favourite snacks for when they can stomach it
Hand cream / body moisturiser (your skin gets dry)
Lip balm
Sudocrem (my husband got bed sores on his ears)
Soft toothbrush as your mouth becomes so sore
Cans of ginger ale (for nausea)
Toothpaste designed for dry mouths (my husband had such a lack of saliva left, regular toothpastes were difficult to use)
Books/game consoles/laptop (for days when they aren’t nauseous)
Slippers
Your own pillow
Soft blankets
Body wipes (my husband became too weak to shower and the water was usually cold anyway)
An armband specially made to cover their picc line (if you have one) in the shower
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Good morning @Lina
Thank you for your post and welcome to our forum.
We are so sorry to hear about your husband’s recent diagnosis of Burkitt’s lymphoma. We can imagine this is a difficult time for you all.
Please do get in touch on 0808 2080 888 or email us at support@bloodcancer.org.uk if you would like to talk through anything with a member of our support services team.
I can see that others have commented with some great advice and recommendations. I’m sure by being there you will be providing support to him. Do keep good communication with each other and with the team, especially with the clinical nurse specialists and ward nurses to update them on how he is doing and feeling so that they can also support as best they can.
To add to the lovely list @Rosevin4 has provided I would add perhaps puzzles such as crosswords etc. or books if he likes those things and ginger biscuits if he likes them too.
In case it is useful, we also have a page on treatment for Burkitt lymphoma Burkitt lymphoma treatment and side effects | Blood Cancer UK this explains a bit more about the protocol and side effects.
Do take care & warm wishes,
Emma (support services nurse)
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Hello Rosevin4, thank you so much for answering, you probably have the best idea on how lost I feel atm. He is 42 yo next week and it all happened so fast, but he is currently admitted at the best hospital in London and I can only hope he will fight this. Today was the first day of chemo and he is on the same protocol as your husband, still trying to remember all the meds but deff Codox M R, and IVAC to follow next 
He is in good spirits and keeping a positive attitude, but I know it will hit him hard at some point. Thank you kindly for your list, it’s sooo helpful! We have some bits already, but I added the other stuff on my list, as well as an electric razor bc of the risk of bleeding… I would absolutely love to have a chat with you and check out the facebook groups. Thank you thank you thank you 
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No problem at all. It is all so fast. The symptoms start fast, the diagnosis is fast and the treatment is fast so you don’t have time to get your head around it before it is over and you feel like you have been hit by a truck. Reach out to me on this thread any time. Sending lots of love x
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Indeed, everything is happening so fast… I was wondering what days were the worst? And when did the side effects started happening? So far he’s had 3 days of chemo and no side effects to Rituximab but I know hard days are ahead. When was your husband able to go home? And was it safe? I worry with a toddler and 2 cats at home 
The consultant put the fear of God in us with the risk of infections and sepsis… I’ve gathered lots of tidbits to give him comfort and I hope they will help.
How did you make the transition from utterly petrified/ brokenhearted to strong/supportive? I am a bit paralysed now, but I am not the one going through this, so I am trying to snap out so I can be there for him.
Hi lovely. So firstly, infections are super normal and it would be unusual to not pick one up. I think my husband got one around day 5 of the first cycle but you wouldn’t have really known if they hadn’t of picked it up through him having a raised temperature. They then check your blood for infections and give you antibiotics. He never got any serious infections that they couldn’t just treat with antibiotics because the team are always so on top of everything.
I was super paranoid about bringing bugs in but the team explained most infections would come from my husband’s own gut, it is just his immune system can’t fight them off like ours can. So obviously take sensible precautions and don’t visit when ill and mask up but don’t drive yourself insane with it all.
They will advise you about the precautions to take at home before they discharge him. We were lucky enough that my husband didn’t have to be re-admitted between chemo cycles.
My husband didn’t have any reaction to rituximab. I think because it is immunotherapy so has less side affects. He was in hospital 22 days with the first chemo cycle but that was because of infections. He didn’t get many infections after that so just stayed in hospital the recommended amount of time. As soon as their bloods recover from the first round you are back doing the next one so it is pretty full on. He felt worse every cycle which is the norm as treatment just makes you so weak. He disliked IVAC the most as it made him more physically sick but the methotrexate part of codox-m gave him mucositis every time which was very painful. Obviously everyone reacts completely different and some people don’t get mucositis.
Have the hospital given you a treatment schedule? I asked for one and that helped me get my head around it a bit. Then I just focused on how high remission rates are and took it day by day.
Everything you are feeling is completely normal. I was a complete mess at first and had to be prescribed zopiclone to sleep and diazepam for the anxiety. It took a couple of weeks for adrenaline mode to kick in for me but that only allowed me to keep a happy face at the hospital, I would then go home and cry but sometimes it was nice just to have that release after a long day. Things are even more difficult for you because you have a toddler. I didn’t have any children at the time my husband was going through it so I could focus entirely on getting him through this.
Since my husband went into remission I have had an IVF baby (who is 21 months) and I am 6 months pregnant now. I currently feel like I am being pulled so many different ways, I am unable to support my mum at the hospital and visit every day the same way I did for my husband and I feel guilty for it but others depend on me now. So I really do understand how overwhelmed you must feel right now. I hope you have a good support network, I found that very valuable.
Anyway, super long message! I wanted to make sure I didn’t miss anything. It helped me so much at the time talking to others online who were going through the same treatment. Especially as it is so rare. If you have Reddit my username on there is prestigious_olive_23 so feel free to DM me anytime you are going through the panic.
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Hello Rosevin4,
Thank you so much for all this information, it really is extremely helpful.
I realised I was a bit absorbed by my own worries… I just want to say how sorry I am for what you are going through with your mum atm and what you’ve been through already with your husband. It can’t be easy at all being pregnant and with a little bub. It’s so tough adding extra guilt on top of the constant mum guilt you must be feeling already. Hang in there! And wishing your mum lots of strength
I tried to look at a facebook group on Burkitt lymphoma, but after reading a few posts my anxiety went through the roof, so I would rather stick with less online info, trust the medical team and take it day by day.
I tried to look you up Reddit, but at 40yo I think I reached my peak techy knowledge 
I tried to send a dm, but i can’t seem to find your username. Mine is Left-Response-5505 bc I have no idea how to change/edit it to sound more normal .
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That’s okay. I tried to message you but it said unable to message user so I have no idea, maybe your settings are set to not allow messages. I also am getting to that age where I am starting to struggle with technology haha.
So sorry that the group made you feel more anxious. Thinking about It, I didn’t actually read any of the posts until my husband was in remission. It is a good group if you have a specific question but posts probably tend to lean more towards negative because people are less likely to post about positive things. Rest assured there are sooooo many people on there that are in remission and back to loving life.
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Hi Ceri. That would be so helpful thank you, much appreciated!
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Hi Ceri, that’s so kind of you! Yes please it would be most helpful xx
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Hi Lina, I am sorry to hear about your husbands diagnosis. My 19 year old son has just been given the same diagnosis. We live in Australia and I am curious about the different treatment options. We have been told that he will remain in hospital the full 6 months, our hopsital is 2 hrs away. Is your husband in hopsital full-time or in and out? I hope everything is going well for him.
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Hello Sam,
Firstly, I am so sorry your son and your family are going through this right now. I totally understand how scary things seem atm.
I am very happy to provide any info I can regarding the chemo protocol.
As I said before, my husband was diagnosed at the beginning of May and he was started on Codox M R / IVAC R protocol which consists of 4 cycles in total, one cycle every 21 days ( Codox, IVAC, Codox, IVAC). The timings can vary depending on the side effects from chemo and what his low neutrophils count will cause.
My husband has been hospitalised for the entire cycle one that lasted about 16 days, he was meant to come home for a few days, but his neutrophils dropped causing mucositis and neutropenic colitis so he had many tests to check for infections and was started on iv antibiotics. The 2nd cycle was delayed by 2-3 days. He stayed hospitalised for about 14 days for the 2nd one and he managed to come home for 7 days, then he was readmitted for cycle 3.
They have to be hospitalised bc they receive chemo almost every day, they have to be closely monitored for side effects to chemo and any clinical signs will have to be managed appropriately. So it is understandable why they want to keep him hospitalised the entire time.
It’s one of the most intensive chemo protocols, but it is like this for a very good reason. Burkitt’s lymphoma is very rare and aggressive, so they must be as aggressive with the treatment.
So far my husband responded very well to the chemo, he lost a lot of weight, he is tired, weak, he lost his hair, but he is fighting this, he is positive and every day is one day closer to the end of the treatment
As you can see, I found an amazing pen pal here - Rosevin, and we have been discussing our journeys privately, because this thread would have gotten to 100 comments already… so if you want we can ask the moderator to open a separate chat just for the two of us. Otherwise, ask away here.
Make sure he has access to a TV or laptop, fire stick, netflix, game console etc.You can totally get him books and puzzles, but most of the time they will be too tired to focus on reading, puzzles, so TV/laptop/games are easier. Make sure people keep in touch, friends and family are visiting him regularly. Have a good supply of ice cream for him as well, anything to get him through.
Have faith, keep positive and stay strong for him
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Hello there @Sam87, welcome to the forum at this difficult time. I’m so sorry to read of your son’s diagnosis with Burkitt lymphoma. It’s lovely of you to reach out to @Lina and perhaps I can offer some additional support to you both.
I don’t know if you’ve read the Blood Cancer UK information about lymphoma generally and specifically Burkitt lymphoma so here is the lymphoma page and Burkitt lymphoma here: Burkitt lymphoma | Blood Cancer UK
For further information about Burkitt lymphoma have a look at Macmillan and Cancer Research UK.
Really glad you’ve found each other in this thread and do keep sharing if it helps, I’m sure others will find great comfort in your experiences.
I’m sorry not to be able to suggest support closer to home for you @Sam87, may I ask what blood cancer support is like where you are in Australia? Are there organisations like BCUK there? This is such a great resource, I’m really glad you found it!
Just to add that I’m really glad @Lina that you also found @Rosevin4 here. I hope you’re all doing well as can be expected. If you would ever like to discuss less private stuff here I’m sure it would come to be a support for others in this public forum going through similar.
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Lina thank you for responding. I will be making his room as comfortable as the hospital all allows. It will be very hard being 2hrs from him, thankful for technology and facetime. I’ve been told to get him lubricating mouthwash, is there anything else you can recommend?
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Hi Duncan, thank you for reaching out.
I am sure we have some good support networks available here, I just haven’t looked yet. I found this forum when looking up burkit lymphoma.
We have a chemo shortage here at the moment so it has been delayed another 4 days.
Thank you for sharing some links, i will have a look soon. I am being very careful with what I read at the moment, I am still processing this.
Really appreciate the replies. Thank you.
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Sorry my replies were delayed, someone flagged my replies and i got blocked, not sure why 
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