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Hey guys. Has anyone had issues with EBV following an Allo that gave them bad glandular fever resulting in problems with their pituitary gland. I have just got out of hospital again after being extremely poorly and to the point my family didn’t think I was going to make it. I’ve never even heard of it but it’s caused me so much trouble these past few weeks I’ve literally lost about 2 weeks of my life where I have no memory of anything even my family visiting twice from Leeds and sitting for hours with me in hospital, it’s been truly horrible. My mother-in-law said she thought I’d just given up and would come and make me walk up and down the corridor but again, I don’t remember any of it, nothing. I didn’t eat for 2 weeks and the hospital thought I had developed mental issues with it all and wasn’t coping. It’s only because my wife and a nurse I knew from my own hospital said no it’s definitely not him, there’s issuse with something in the brain that they started to look further otherwise I dread to think where I would have been now because it was really hard to find. I’m now on tablets which have improved it immensely but I’m still not 100% and have to see a endocrinologist going forward. It’s still not fully clear yet but they believe it’s become swollen due to my fever and was putting pressure on all the nerves which pass through it to the brain. Of all the things I thought might get me it’s something really strange and random that causes me to be so so poorly and only the determination of my wife and nurse that stopped it almost certainly becoming potentially fatal. With regards to the EBV I’m still been treated for it but hopefully next test will show it’s almost gone and all my my bumps and lumps have almost gone so that’s all positive. I’m suffering with GvHD in the gut but it’s no too bad yet but it’s causing minor issues but if it’s killing the cancer and the EBV it’s a small price to pay. Anyway i just thought I would share my latest twist on the journey with you guys.
just read this on another place (!) and posted, sooooo glad you’re improving, I got pretty concerned when you said how high your EBV markets were. I know daughters team jumped fast when hers began to rise.
hope things really stabilise and you start to feel better very soon, take it steady!
I still don’t know how they jumped that high before they were noticed. 13,000,000 is so high it makes me think they might have missed a weeks to enable it to really take hold, I honestly don’t know. It’s made me so so poorly and along with the gland issue, made me touch and go for a while, I honestly believe that. Hopefully can start to build my strength up but my gland will be an ongoing issue that will require treatment for the rest of my life but at least I’m still here for now.
Sorry to hear this Mark, I know a number of folks who had EBV and they all took a hit. I think Greg has ongoing issues with glandular fever?
Its always hard for those looking on as they see it but at times we are out of it........ still have no memories of being in ICU...... but maybe a good thing.
Looking for a quick recovery from this my friend.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
I think it’s because listening to my wife, family and friends tell me how bad I was and realising how much it knocked me has really scared me and I think this is probably the first time through out all my journey I’ve felt helpless and scared. Perhaps it’s the kick up the arse I needed to tell me I need to take it easy. As I said to Moomy it’s the fact it went from nearly nowhere to 13,000,000 in no time. Just need to keep a closer eye out for it going forward.
Your point about Greg has answered my last question. Can it keep coming back like that??
I managed two of the three. I had GVHD of the guy and EBV about 4 months after my allo. I didn’t have any issues with my pituitary gland though.
With the EBV I was admitted at the local hospital and discharged as they thought it was tonsillitis before eventually getting the correct diagnosis at Barts and being treated with retuximab. Before I was diagnosed I was really ill at home and spent days with a fever and was really out of it.. I would wake up and know what I would dream before I went back to sleep (bizarrely I dreamt about pots and pans and how I had to try and balance them all!). This happened for days.
in the end after being to Barts a couple of times with no admission and my situation worsening my wife drive me there on evening and refused to take me home so they had to admit me. The next day the consultant had me diagnosed within a couple of hours and I had retuximab that day. The next morning all the symptoms had gone. No swollen and sore throat and I felt fine (washed out and tired) but apart from that ok. They said I could go home but I actually asked to stay another night as I was shocked that a drug could have such an effect after weeks of being ill. Went home the following morning and had 3 more retuximab doses over the next few weeks.
Hopefully now you are in the mend everything else will settle down. Fingers crossed for you.
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having got you so very ill I suspect any and every time you now have a blood test it’s something they will look out for! I wonder if something like the rising EBV on a routine blood had been missed, too? I hope that recovery from now on gets easier, you will need to build up strength and stamina all over again, such a pest when you seemed to be doing well!
I remain even more thankful for daughter’s incredibly experienced team at the Christie, who acted on her rising EBV levels before we knew what was happening!
Gut GvHD is horrid, hope they will do tests to see if they can reason out why and how to help. Daughter tried gluten free (her tests for coeliac were negative) and it seemed to work so she stuck to that for a couple of months, then eased back onto normal foods very slowly and carefully.
Sorry, long day at work so only just getting to your post (which I suppose is a good sign that I am doing well).
i had EBV reactivation around the same time as Paul - around Day 100. To be honest with you, I was so consumed with gut GvHD that I didn’t pay too much attention to the reactivation - indeed, I felt no symptoms at all and it was a doctor who confirmed it via a blood test - I wasn’t eating at that point and was spending all day in bed, so I was already fairly knackered so the EBV didn’t significantly alter how I was feeling. I was given a short course of retuximab and that seemed to do the trick. I’ve not had any long-term impact I don’t think - the glands in my neck and groin swell up whenever I get an infection, and I get tonsillitis at the drop of a hat, but I don’t think they’re connected to Epstein Barr, so I’m really hoping now you’ve had the blip that it won’t cause you any significant long term problems.
What you said about being scared for the first time really struck a chord with me. I had exactly the same feeling with the gut GvHD. The induction treatment and the two SCTs weren’t walks in the park, but I got through them ok enough, but the unexpected and sudden impact of the gut GvHD really knocked me sideways. It was the first time I felt genuinely out of control and it was frightening. I reckon you are likely to be a bit wobbly for a while after an experience like that, so please take it easy on yourself, you’ll need some time to process what has happened and regain your confidence. I ended up needing some psychological support and it definitely helped me to process what had happened - I’d definitely recommend it if you are struggling with it.
Here’s hoping you get a bit of a smoother run Mark.
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Thank you all for the replies. Above is little gift I’ve dropped into the ward before my treatment just to say thanks, crafted with my very own hands, taking orders for Christmas.
Paul the only thing I remember is really vivid dreams but apart from that, nothing and that’s the scary bit. I was around 100 days so we were all the same.
Greg, they’ve already mentioned PTSD and I honestly think I might be suffering from it. I sat on the beach yesterday and poured my heart out to my friend and had a right good cry on her shoulder and I know my wife has too.
Back in hospital at the moment for more treatment and feeling so much better today and the nurses are commenting how much different I look (shower and shave does miracles) but who knows what tomorrow brings on this journey.
as a former NHS employee I just know that gift will be appreciated!
yes, PTSD is incredibly common after all you allo patients have gone through, never, ever let it go too long without a release of some sort, even counselling which can be tremendously helpful. You need to recognise survivors guilt too,
I guess you’ve seen a few fall along the way, like daughter did, and that needs reconciling. She actually composed and wrote a short piano album which is for sale (plus the sheet music) on her website, called ‘Lost’, purely to express her feelings of survivors guilt.
Glad your feeling a bit better after what must have been a tough time.
I had my transplant around the same time as you,I think the day before you.
I was in for six weeks ended up in critical care for 8 days which was pretty scary. I dont think they thought I would survive as my consultant advised my wife to get my sons down to my bedside ASAP. I cant remember a lot about it but it has definately left me with PTSD and I have done a lot of crying in the last few months.
Seeing a counsellor has definately helped a lot,my hospital arranged to see one straight away and I accepted.
I have had one week in hospital since then and am not feeling too bad at the moment
.I have noticed you are a runner,I too am a keen runner, lets hope we are both back running again soon !!
It is a journey like no other and the post treatment unpacking can take some time.
I am safe to say that I did not suffer PTSD as on the whole we have not had any lasting issues.
As moomy says, survivors guilt it very real and that has been my main hurdle and even a few weeks back another friend died from breast cancer in her mid 30s leaving 2 under 2 year old boys - that is 4 friends during my 4 years post SCT so thankfully we have identified this trigger and have clear strategies in place to work this out.
It’s good to talk over stuff face to face with an expert - it helps a lot. Our local Maggie’s Centre has been amazing.
Yes, survivors guilt can hit even if it’s not cancer related, daughter had a musician friend couple die during the end of the summer in a plane accident with their little boy, the obit was in BBC Music magazine, she found it tough and retreated into herself a bit. hugs xxx
Sad when anyone young goes. I had to take a break from this site over the summer. Sometimes too much talking or reading revives memories you dont want. Its a case of finding the right level and the right listener.. i neither like the Get Well Soon people who want you to hurry up and be normal again. Nor the gloomy people who only see the worst.
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