Husband recently diagnosed with Burkitt's lymphoma

[Sam87]

Oh it was so hard, driving 2 hrs feeling excited like a little kid again, I couldn’t wait to see him. The night before he was so excited too, it was a shock. I don’t blame him at all, I have no idea how he feels and one day when he is a father he will have some understand of how i was feeling through this.

I understand what you mean about not visiting all the time being a positive. You are very strong, such a lot for you to go through whilst parenting on your own. I hope you have a lot of support around you.

[Sam87]

Thank you for responding Erica. I am okay with being his punching bag, it hurts but I know he needs to let some out and I am obviously the one he trusts the most with his emotions.

I can’t imagine how it feels to be getting this treatment, I sympathise so much. I am learning to have a much deeper compassion for people. I have always been very empathetic but I guess with hard things like this I’ve been very good at blocking it out, or saying comments of support without really understanding the situation. I hope that makes sense? 5am here living on very little sleep.

[Lina]

Hello Sam,

How are you and your son getting on? He must have finished the first round by now. I hope he is coping well

My husband had his last bag of cheno yesterday, but he has been neutropenic for a few days and today he got a temperature. They’ve started iv antibiotics and fluids asap, so he will stay in hospital for a few more days until his blood count starts to improve.

So he started on the 7th of May and finished the 4th cycle on the 24th of July with minor delays in between cycles…

Sending hugs xx

[Sam87]

Hi Lina, sorry to hear about his temp, I bet there were many emotions with the last bag. His treatment was short, i wonder why the difference. My son’s is 6 months.

He is going really well, he just finished part A, will start part B on the 3rd. He said he feels tired but otherwise happy and well. His bloods are all low at the moment. I am going back up on friday, hoping his bloods pick up by then.

Thanks for checking in. This is such a journey.

[Lina]

Hey,

So happy to hear he is doing well.

We were told that his tx might take 6 months, but he had 4 cycles which must be done 21days apart, so technically it’s less than 6m. But I think they also take into account potential setbacks, longer recovery between cycles due to potential side effects or maybe tweaks to the cycles depending on how you respond… We were lucky that there were only minor delays between his cycles, maybe 2-3 days.

And then it is possible the protocol might be slightly different for younger patients, maybe

Good luck Friday and sending lots of strength xx

[Sam87]

Sorry if you have already told me, was 1 round Part A or part A and B together ?

[Lina]

Hey, sorry but I don’t know what Part A and B means , it might be too early… just woke up. If things make sense I will text later. xx

[Lina]

Hey,

I assume we are talking about the protocol so his was:

1. Cycle 1 - Codox M R that lasted 16 days, started on the 7th of May,

2. Cycle 2- IVAC R that lasted 6 days, and started on the 30th of May, a few days delay bc he has neutropenic colitis that he had to recover from.

3. Cycle 3 Codox M R started on the 23d of June

4. Cycle 4 IVAC R started on the 15th of July. So roughly one every 21-24 days. I hope that answers your question

[abh97]

@Lina @Rosevin4

Hi both, I hope you don’t mind me reaching out but I’ve read through this forum and feel like I relate to both of you, having been in my position.

My partner (30 years old) was diagnosed with Burkitt’s Lymphoma on 21st May. This came after a lot of trips to A&E and continually being told that he had gallstones, before being rushed into emergency surgery due to intussusception and later finding out the blockage was caused by a tumour. As you will know this came as a huge shock to us, my partner is fit and healthy and had just competed in a Hyrox several weeks before being diagnosed. Our whole entire lives were flipped upside down and I won’t lie I have struggled massively with this. He on the other hand has been amazing, and tackled every step with such strength and positivity. Thankfully I have been able to take time away from work and have been staying with him in the hospital during each cycle.

He started his treatment on 28th May (R-CODOX-M / R-IVAC) and we are now on his 4th and final cycle, due to finish in 3 days time.

We have been told that when he finishes his treatment he will wait 6 weeks before having a PET scan. He did have a CT scan half way through and we were told there was nothing of concern on there which is amazing and has given me so much hope however I am already so apprehensive about that final PET scan. I also worry that if this treatment has done everything it needs to (which it will have!!), will I spend the rest of our lives worrying about it returning?

I have so many worries and concerns but taking comfort in the positives. It would just be nice to talk to someone else who has been/ is in my position as you know it’s so rare.

Thanks both.

[Lina]

Hello ahaigh97,

So lovely to hear from you and I am so sorry you are going through this and you had to reach out, but so glad you did.

This journey is a hard one and so far, during the treatment, we’ve been running on adrenaline and just taking it one day at the time, but it really hits you hard once everything stops and you are left with “now what?!?!?!” and the scanxiety is so tough!

My husband has been home since last Tuesday and he is doing well. He is having this period of wanting to do everything l, seeing everybody, he really is on a"high" while I am collapsing around him due to everything we’ve been through and the ptsd kicking in hard

Regarding what happens next, we are waiting for a PetCT on the 1st of Sept, then appointment for results a week later. And that’s when we hope we will be able to ask more questions.

From what Rosevin kindly shared with me and what out Dr said briefly:

• BL is one of the only types of lymphoma that they consider ‘cured’, but they won’t say that before the 2 years mark.
• It’s rare to relapse after 6 months but If it were to relapse, it tends to happen within a few months after the end of treatment or just before the treatment ends.
• More scans are not necessary post last chemo scan, bc a relapse would be quick and they would show symptoms.
• The chemo regime that our partners had is so effective that it has been the standard protocol for Burkitt Lymphoma since 1989, only being amended slightly in the mid-2000s when they added Rituximab to the mix. So fingers crossed they will be ok

We are also waiting to speak to our consultant and ask all the questions I was afraid to ask during the treatment, afraid maybe is not the right word… but I just wanted to focus all my energy on the treatment and getting over the side effects of chemo first, then ask the questions I was itching to ask - how long is the monitoring, risks of relapse, what to do in case of relapse, are there any other treatments available and what are they, statistics… Once I have more info I will get back here.

I hope this helps, and I hope knowing you are not alone in this gives you some comfort. I understand what you are going through and I am here if and when you want to talk.

What hospital are you at? Just wondering if we might have crossed paths at UCLH seeing that their treatment overlapped a bit.

@Sam, I hope you and your son are doing ok, sending prayers!

lots of love xx

[abh97]

Hi @Lina,

Thank you so much for getting back to me.

I truly believe the only way in getting through this horrific time is taking it day by day, sometimes moment by moment, otherwise it’s just far too much to even bear. But I can imagine once the treatment is over, as if is for you and your husband and very nearly is for me and my partner, it’s a case of ok now what, and just waiting for the scan/ results.

I am so pleased to hear your husband is doing well but I imagine I will be very much like you in a weeks’ time when we get home, thinking, what on earth has just happened? I am sorry that you are struggling but you are not alone. I very much relate to everything you are saying. I am apprehensive about that period of the treatment being over and awaiting the scan - do we try and get on as if everything is normal? I’m really not sure how I will navigate it but I guess that’s also going to be a case of taking it day by day.

Apologies if you’ve already mentioned within the forum but how did your husband manage the treatment? And how is his recovery going so far (I appreciate it is still early days)? My partner has really handled the treatment amazingly, I can’t get over his strength! He of course has had really bad / weak days and his main side effect that’s floored him is the vomiting. We’ve had a tough few days since this cycle began, with vomiting , and now he’s come out in a rash over his face. We’re told it’s likely the cytarabine, but he didn’t get the rash during cycle 2. He’s definitely feeling it the most now than he has throughout this whole course of treatment (physically and mentally) but we are very nearly there. His temperature spiked today but it seems to be going down so fingers crossed that’s not a sign of an infection. It’s all a lot, and I struggle so much seeing him like this.

Thank you / @Rosevin4 for that advice and do please let me know what your consultant says in re to your questions as these are also things I have hesitated asking throughout treatment due to fear perhaps but also like you wanting to focus on the treatment in the first instance and not jump too far ahead (which I very much struggle not to do!).

I honestly can’t thank you enough and sorry for venting a lot of stuff in this message but I’ve longed for someone to talk to who can relate on a level that no one else can.

We are in the Freeman, Newcastle upon Tyne. Excellent hospital.

Take care, I will be thinking of you and your husband. Hope to speak soon.

[Lina]

Hey,

Good to hear from you! I felt every word you said in my soul. It’s all such a rollercoaster and I just want to get off already…

My husband has also been strong and positive during the chemo, he had neutropenic colitis with the first codox m r, but not with the second. He had severe headaches and weakness with IVAC and some sickness, but luckily not too bad. He hated the spinal infusions, always sweating when it was time for them… not necessarily the pain was the pb, but the potential risks that came with them.

At the moment he is well enough to drive, go shopping, go for walks, we went to the beach today, but I have to time it bc he does get tired. Luckily having a toddler taught me to carry snacks, drinks and be very careful with timings so I know when to take breaks, when to go home etc. He wants to do a lot, but I have to stop him a bit and remind him to take it easy. He had a blood test on Monday which came back ok, the Dr said he is on a positive trend, but they didn’t give us specific number and they didn’t plan another blood test.

His hair has started to grow back and every day it’s more noticeable and he started to gain a bit of weight as well, which is great bc he lost 20kg during the last 4 months…

Mentally he is struggling, it’s all coming back to him and the anxiety is a bit paralyzing. He started therapy sessions this week, and that helps. He’s had therapy before and he 's got the right tools and mindset to cope with this, but it helps talking about this new trauma and the all the fears that come with it.

Tonight for eg his stomach hurt a bit and his face changed - he worried that it’s the cancer again… And we had such a great day at the beach today with our little girl …he was afraid to enjoy it too much bc what if something bad happens? It’s all a mindfudge… I told him to postpone his worry - when he feels like this or gets overwhelmed to say “not now, i will worry about it later, at 7pm or after the petCT”. It’s a technique that my own therapist told me to use. You tell your brain that you are not dismissing this worry, you just want to delay it and you will deal with it later, and usually by that time you will forget about it. And he started doing this, hopefully it will help him bc it deff helps me.

I think we just need to remain positive and pray for the best outcome. Atm they are doing well and they managed to survive a gruesome chemo regime, and the relapse is rare. So I am just trying to make his life easy and live well and make lots of happy memories. And pray for health and strength

You sound dedicated, loving, strong, your partner is blessed to have you by his side! And you’ve managed to go through this together, you will manage to get through the next stage as well. The days are long, but the weeks/months fly by, so hang in there!

Talk soon xx

[Lina]

And if you haven’t applied for a Blue Badge already, do it - we found it very very useful. He is still very tired and irritable, so it’s less stress overall finding a spot quickly.

[abh97]

Afternoon @Lina,

I have huge support from my friends and family but it’s so helpful to speak with someone who is also going through it first hand, so thank you again!

I’m sorry your husband suffered those side effects, it really is the most harsh regime but both he and my partner are just amazing for enduring it! As one of my partner’s nurses said to him last this - this is the most cruel chemo regime so he is a hero for going through it!! 2 days left of treatment for my partner including today and one more intrathecal that we are awaiting the date for (hoping it’ll be tomorrow/ Tuesday) then done! So very nearly there. He’s a lot better today than he was yesterday thankfully. Such a rollercoaster.

I’m so pleased your husband is well enough to do all those things and I hope you enjoyed your day at the beach! How soon after treatment did he start to drive? We haven’t had any guidance on that just yet and it’s something I wondered. I imagine my partner will be the same in that he will try to do too much and think he’s back to normal as I’ve even noticed him wanting to get on as normal during the breaks between cycles when he’s felt well enough.

I’m also pleased your husband’s blood test on Monday came back ok! That’s another thing I wondered re post treatment - how often he’d be back in for blood tests etc. Hoping we are informed about this upon discharge from hosp.

Excellent that his hair has started to grow back already and that he’s started to gain weight! Did he lose 20kg due to a complete lack of appetite? My partner hasn’t lost a lot of weight during treatment thankfully because he lost a lot in the lead up to diagnosis with the bowel blockage! His appetite has been rubbish in hospital but good when back at home so I’ve just tried to feed him lots of good food during our breaks between cycles which I think is the reason he’s managed to maintain his weight.

I’m not surprised he is really struggling with the anxiety. What he’s been through is huge and I would be surprised if he wasn’t worrying at any sort of pain and expecting it to be the worst. I’m so glad he’s started therapy sessions. I’ve encouraged my partner to do this too so I’m hoping he does after treatment as I’ve done a lot of reading and a lot of people talk about how the diagnosis/ treatment happens so quickly that there’s no time to really process everything and there’s no surprise it really hits them post treatment. Right now our other halves have had treatment to focus on and once that’s over they will have a lot of time to come to terms with the horrific ordeal. I’m a huge advocate for therapy and simply talking, I’ve encouraged my partner to do this from the get go. Postponing worry sounds a very good technique to me and might try it myself to be honest!! As I am a huge worrier.

Positivity is key like you say, we have no reason to believe that the treatment hasn’t done exactly what it needs to so why even think that way.

I have just turned 29 years old and if I told myself this is where I’d be even at the beginning of the year I would not have believed it. I lost my 27 year old friend to cancer just a few weeks prior to my partner was diagnosed and I’ve spent a lot of time feeling very angry and trying to understand why life can be so cruel but these things make us stronger done they and I truly believe that my partner and I will live a long and happy life after all this is over and this is just a very unfair lesson to make us appreciate things so so much more.

You too sound like you’ve been your husband’s rock and to be dealing with this with a little one too I can’t even imagined how you’ve managed to find such strength but credit to you!

Speak soon, thank you so much again x

[Lina]

Hey,

I will try to answer your questions, hopefully I will manage

He lost so much weight bc he had severe stomach ulcers and he could not tolerate many types of foods, except banana, mashed/baked potato, boiled chicken and eggs, chicken soup. That’s all he could have and was on a massive kcal deficit bc of this. Plus days when he just could not eat or tolerate any food. This lasted for about 2 months, then he had days when he felt nauseous or couldn’t eat, or everything tasted sweet bc of the chemo… So yeah, we are happy he can eat anything now and he is gaining weight.

After he finished IVAC R he had to stay in hospital a few extra days bc his neutrophils, platelets and Hb were low. So he needed a blood transfusion and two platelets transfusion before he could leave. The blood test was done one week after his discharge. They said no more bloods needed, but it really depends on them, if they feel unwell, if they get a temp then they must be seen by a dr on a case by case basis.

The last day of hosp was incredibly emotional for him, he cried a lot when he said goodbye to the nurses, he cried on the train on his way back and he cried when he got at the train station ( we live 40min away from London). It was all very surreal that he could just leave the hospital knowing that he didn’t have to go back for a few weeks and only for the PET CT and not for more chemo. He is getting more anxious every day and the ptsd has started to kick in now… so I am happy that he started therapy.

He started driving the moment he stepped off the train he just wanted to drive home by himself and I let him.

Yeah, with all of this thrown at you it really changes who you are and how you see life and how you empathise with other people going through this. And how you start enjoying the little things, like being able to drive and going shopping and picking up your child in your arms; things that you took for granted before, all of a sudden become so valuable.

Your fears and worries are so valid, having your friend pass away at such a young age and so close to your partner’s diagnosis, of course you are traumatised. I hope you are getting the help you need as well, and I am so happy you have family that is looking out for you.

My therapist gave me this website that has loads of self help information, I hope you will find it useful - cci.health.wa.gov.au especially the worrying bit.

I struggled a lot during all of this, but I had to carry on working and care for my little girl, and I couldn’t have done it if my mum didn’t move in with me in April. She’s been so incredibly supportive, and has helped with shopping, cooking, cleaning. I don’t know how I would have managed to carry on without her…

I would say that you will have to find a bit of a balance when he finally comes home - let him do his thing, but be there to slow him down a bit and remind him to rest. And if he wants to climb a mountain or go cycling when he gets home, tell him to maybe wait a couple of months His body needs a bit of time to recover and don’t rush back to work.

We agreed he will stay home until after the pet CT, and then he will go back for half days for a period of time. Luckily he works from home so he can avoid the commuting and exposure to viruses this winter.

We forgot to ask about this - but I know it’s indicated we all get the flu vaccines this autumn, but not sure if he needs any other vaccines… Maybe you can find out something before you guys leave hospital, please let me know. Otherwise we will ask in September.

I agree with you re how much it helps talking to someone who’s going through the same thing. I was so lucky that Rosevin answered my post and we’ve been in contact throughout my entire journey. She’s been an absolute angel for talking to me, sharing her own journey, realising what is " normal/expected" re treatment and side effects, and just generally being there for me. I will be eternally grateful to her for taking the time to answer and I promised I will pay it forward.

Hang in there, not long now! xx

[abh97]

Evening @Lina,

I’m so sorry for just venting everything to you, I really appreciate you taking the time to get back to me. If only I’d have found this forum / you and @Rosevin4 sooner. It would have been so helpful to have someone to speak to throughout it all and like you say, understand what is expected / ‘normal’ to lessen the fears and anxiety that have floored me throughout.

Your poor husband having stomach ulcers, that sounds really difficult to deal with but I’m so pleased he’s back to eating again now and gaining that weight!

My partner has had a few transfusions too but these have mostly happened during his breaks when he’s gone into the day unit for bloods/ review (he had to do this every few days while back home which was quite reassuring to be fair, knowing he was going to be checked over every couple days as I worried during the breaks in case he became poorly quickly - thankfully we are just a 30 minute drive from the hospital). That’s good to know he only needed the blood tests one week afterward and hasn’t had to keep going on for regular ones.

I can imagine the last day being so emotional, bless him. Again it’s probably a case of reality hitting and realising the horrific ordeal he’s endured and gotten through!!! I hope therapy really helps him and in time he can manage the anxious thoughts better, I hope he’s being kind to himself and reminding himself how amazing he’s done and is doing, and you too.

I imagine my partner will be the same in relation to driving haha, and he’s a farmer too so will be into the tractor the second he’s able!! Not that there’s any good time for this to happen but over harvest has been the cherry on top, he’s missed work so much.

It definitely changes perspective that’s for sure. The little things really are the most important. My partner and I have had to cancel/ miss out on a lot over the last few months, a trip abroad for his brother’s wedding being the most heartbreaking - he was supposed to be best man. But health always comes first and it’s made us focus on the little things more than ever.

It really has been the most difficult time of my entire life and I wouldn’t have been able to put one foot in front of the other without the help and support I’ve received, which I’m so grateful for. I will definitely look at that website your therapist recommended to you, so thank you. I’m so pleased your mum was able to come and stay with you and be that rock you needed, for you and your daughter. Honestly I can’t imagine how hard it’s been having to go through this on top of work and looking after your daughter - you’re amazing!

Haha no mountain climbing or anything of the sorts just yet that’s for sure!! I’m hoping he just listens to his body but if not I will be there to remind him.

I will find out about vaccines before we get discharged and let you know! Let me know if you have anything else you’d like me to ask while here too.

So sorry just one last thing, did your husband have a PICC line fitted? If so, was this removed as soon as treatment was completed?

Thanks again, sorry for the long messages - happy to talk privately if easier/ if you’d like, and so I’m not clogging up the forum with my venting x

[Lina]

Hey,

Specifically about the PICC line, as I have my husband here to explain:

• He did have one in his left arm which was removed on the day of the discharge,
• There were some minor complications, due to the picc line having been in for 3 months; he’d developed scar tissue around the two metal hooks holding the line in and one of them would just not come out. A more senior nurse was called in, she moved his hand over his head, extracted the line first, then the second hook came out more easily. But it did hurt on the first try. So if they are struggling, ask for a more senior person or explain what worked for my husband.

He felt so much relief when he got rid of it and the little wound/hole healed within 3 days.

I will tag a moderator to see if they can open a private chat for us. xx

[Lina]

Hello Ceri,

Any chance you could open a private chat for myself and abh97? Thank you kindly xx

[Rosevin4]

Hi lovely,

I am so happy you have found us, although obviously I wish the circumstances were better! Just wanted to apologise for being quiet, I had a baby a few weeks ago and everything leading up to the birth was quite dramatic. Baby boy was 6 weeks early but we got to go home from NICU yesterday and he is doing amazing. Kept wanting to jump in on this thread to say hi but never got a chance! I can see you have been talking to the wonderful @Lina though which must have been so therapeutic for you. It is the best thing to be able to chat to someone who truly understands when you are going through something as dark and life changing as this.

Really pleased that your husband has come to the end of treatment. I know everything is so terrifying and unknown right now. There is literally no way to get through this other then to take it one day at a time, sometimes just a minute at a time. The period after treatment was the hardest part for me mentally, and I feel like that is the same for a lot of people. The 6 week wait for the post treatment scan sounded like forever when the doctors first mentioned it but it will go quickly. Just try and focus on spending quality time with your amazing husband. I had severe PTSD after treatment ended and found EMDR therapy really useful.

Sorry to only briefly touch upon some of the things mentioned in your posts. My husband also vomited a lot from the Cytrabine and none of the anti-nausea drugs seemed to work. It was probably the sickness and the mucositis which were his absolute worst parts of treatment. He always got mucositis from the methotrexate and the pain was so bad he had to have a morphine drip.

He also got his picc line out as soon as treatment ended and before the pet scan which made me feel a bit more comforted as I know they would have had him keep it in if they thought treatment hadn’t been successful. In regards to vaccinations he was only advised to get COVID and flu vaccines every year. Your husband will be eligible for them both now as he will be classed as immunocompromised. There is no need to get childhood vaccines or anything like that, they only recommend that if you have a transplant.

My husband was diagnosed at the age of 33 and has been in remission for three years and four months but sometimes it feels like yesterday. Since remission we have had two IVF babies with the sperm that was frozen prior to chemo. I remember so vividly being in your position, completely terrified of relapse, getting myself into an absolute state every time my husband caught even the most minor of illnesses. I told myself one day it would all just be a bad memory and somehow that day has come, and that day will come for you as well.

Sending lots of love x

[Rosevin4]

Just catching up on your precious posts. I am so sorry to hear about the loss of your friend and I completely understand your anger. I find myself so angry about how random it all is, how people just get sick for no reason and how none of it is even remotely fair.

My Mum was diagnosed with Acute myeloid leukaemia ('AML') in April out of absolutely nowhere. I accompany her to all her appointments which are literally in the exact same consulting rooms my husband was seen in. I see all the same members of staff I saw during my husband’s treatment. When she was an inpatient she even stayed in exactly the same room as he was in. My brain is back to being focused on neutrophils, platelets and RBC again! I feel angry that I have spent so much of my thirties in hospitals when my friends get to live normal lives. I know it is a selfish thought as I am not the one who is ill but sometimes I do grieve my life before cancer took over everything. It is so easy to take normality for granted.