Hey, I don't often post these days or have time to read everything but I just wanted to put a quick question out there myself today.

Anyone experienced a spleen size of 20cm and was that ok?

I was experiencing dull aches mostly at night lying in bed, you know those moments when you want to do nothing but sleep but all sorts of aches, pains, itching and random thoughts pop in your mind, well I digress, I was having my results appointment with local hospital about my bladder cancer (all still stage 1, grade Ta pleased to note), and he mentioned my spleen and I was like yeah I know it's cos of PV, but he was a little too excited by the size and showed me on the CT scan, it looked huge. He handed me a print out of results (not picture) so I am taking to Guys to see Claire on Tuesday, but I wanted some real patient experience.

I try not to over think but running through my mind and doing some research I am concerned it is coming to drug therapy time for me, due to fatigue and immune system being worse than before and now the growing spleen.

Currently been on aspirin and venesections for coming up 8 years this May.

Any advice greatly appreciated. Thank you!

Happy Sunday xxx

24 Replies

  • Hi

    When I first fell ill 4 years ago the spleen was the first issue they identified, and yes it got them excited too. I dont know what it measured at the time they have never been able to say but I had comments it was the biggest they had seen etc etc. It was almost like word spread and I had a number of doctors/nurses that for some reason needed to have a feel of it that night.

    When I got my first measurement it was at 23.5 cm. They were not too concerned (after the initial excitement) as it was not causing me any issues pain wise. It did have knock on effects with my liver and also i have varices because of the extra pressue from it. I presume they are monitoring your liver counts anyway.

    I was put on Ruxolitinib 2 years ago with the hope it would shrink, its hasnt really (its 22 cm now but until recently my health was much improved.

    I have recently suffered a great deal of fatigue and some discomfort from my spleen, I had my most recent ultrasound on friday and it has not grown and the spleen looks in good health, apart from being massive that is.

    So 20 cm is big yes but not unusual with our conditions. The fact they are keeping an eye on you is great, you could ask about ruxolitinib, while it hasnt shrunk my spleen my blood counts have been stable now for the period of time i have been on it, my liver readings have also massively improved to pretty much normal too.

    Hope you go on ok.


  • Hi Paul,

    To be honest apart from palpating I have not had a scan since I was first diagnosed 8 years ago. They should check every 6 months although normally by palpating. This was another hospital in Urology, they were scanning me for my bladder and kidneys and pelvic area but of course the spleen showed up.

    I think my concern is my recent fatigue and the decline of my ability to wake up early etc, I know we are not normal but I hear of people still working full time etc and I don't think I could ever again.. luckily I am working around this but I do get frustrated and to have two cancers is a bigger pain in the arse to be fair!

    Interesting yours didn't shrink.. I was looking at interferon as I really don't want any drugs this seems to be safer as not chemotherapy.

    How is your immune system as our spleen is responsible for that and I have found recently mine feels very fragile?

    I will ask them to do some thorough checks, as I really want to feel as well as I can and I do all the right things and follow a very healthy lifestyle which normally works well.

    Good luck with your spleen and thank you for your response.


  • I think some peoples do Shrink and others dont. They dont know why which is a shame.

    I have worked full time since my diagnosis apart from a spell when i was made redundant. I have however not worked now since before christmas because of my fatigue. I am attempting a phased return tomorrow but have no idea how i will go on. I want to continue working so its frustrating, my main concern is i have a one hour commute which is problamtic should i be struck with fatigue during the working day.

    I attempted one day at work earlier this month and had to come home and felt totally unsafe driving so this is worrying for me.

    My immune system does seem compromised, i think thats normal for any of us with these conditions sadly.

    I am with you on waking up, i am a morning person by nature but have found it increasingly difficult recently so i am already stressed about tomorrow.

    Good luck, and yes push for them to do some thorough checks.


  • Oh gosh sorry to hear you are struggling. I think fatigue is a nightmare. Because of my bladder cancer I have ditched coffee and all caffeine which is really making managing or fighting fatigue harder, plus I am not sleeping well just now and bad quality sleep when I do.

    I will admit I was never naturally a morning person but I used to be able to train my body, now I can't and I was made redundant from a 2 day office job I disliked anyway and I know it was a great way of them getting rid of me as I had been off sick a lot and pulled up about arriving in late.

    I hope you sleep well tonight and you manage your day tomorrow ok. Is there maybe a way you can do reduced hours?

    Good luck!

  • Its difficult as i am quite new in the job, actually i am still on probation which is another cause for concern.

    I was just fine the first two months of the job, the travelling was fine too then i got really ill and have never recovered properly. My old job was a 10 minute drive with as much home work as i wanted so its a shame that came to an end. It was also good as i went to the gym most mornings before work and this was a massive help as excercise does help us a lot, but now with the distance of this job i cant do this and then cant be bothered when i get home.

    I can work at home with this job but its not ideal to carry out the job properly. I am sitting down tomorrow with my line manager regarding the phased return and want to suggest i go in in the morning then go home at lunch and work at home in the afternoon, until i feel properly recovered that is, maybe with some reduced hours too.

    It must be even worse for you with your second cancer i cant imagine how that must be at times.

  • Oh gosh that is tricky. Hopefully they value you and can work around this period. Do you mind me asking when you said you got ill and never recovered, was that related to your MPN or immunity? Only reason I ask is last year I got a stomach virus and couldn't get better, I would feel ok one day then work (I am a massage therapist) then feel ill again, I found a kinesologist who helped me get better with supplements etc, although I am not sure they are enough as been ill a few times with viruses over the winter period. Basically I think I need to live in the sunshine :)

    I can imagine, an hour is a long commute for anyone but with MPN, I found and still find sitting still for too long makes me worse, I can feel exhausted go and massage clients for 2 hours and then feel energised again.. crazy eh!

    Hope you can find some time for some light exercise I know it will help, even brisk 30 mins walk.

    Thank you.

  • I had a really nasty bug at the end of november and havent been right since.

    Im with you some sunshine would no go amiss right now.

  • I was thinking about you returning to work today Paul, so I hope it went ok? Sunshine surely makes everything better, so without it we have to create our own internal sunshine.

  • Hi

    It went well yes, i was only in for 3 hours, had a sit down with my team and then my line manager.

    On the way to see him the 'big boss' came over and asked if i was ok, was saying are you sure you should be here etc etc.

    My line manager was good, agreed mornings this week, just got to go in tomorrow and wednesday, at the hospital anyway thursday so will work home and work around that.

    Also said to take friday off.

    Also said if i wake up in the morning and feel lousy not to feel pressured to work.

    When are you likely to start back?


  • That's really good sounds like they are sympathetic!

    I still work, I am self employed :) I can work around fatigue as much as possible.

    Although did a half hour PT session today and am now hitting a fatigue wall which is a shame as wanted to go to yoga!

    Hospital tomorrow so early night for me I think!

  • Hope the hospital went ok today.

  • Thank you bloods good more tests done, go from there! How you feeling?

  • Its amazing two days driving to work has really had its affect. WFH today.

  • Hi, yes mine got to 34cm at which stage I could only eat very small meals as I felt full quickly, no pain though. Hydroxycarbamide got mine down as well as my blood counts. Best wishes, Frances.

  • wow! 34cm could you see it? I know this sounds vain but I really don't eat clean and exercise to then have a protruding stomach if you know what I mean. It must push on other organs like you say the stomach for instance... Thank you x

  • Hi, no but I lost a stone in weight because I could only eat small amounts so that helped on the vanity front! Nobody could tell by looking at me. Thankfully Hydroxy brought it back to normal. Best wishes, F.

  • Wow losing a stone.. although some people might be pleased. A few pounds for me would be good.. wonder how much a spleen weighs.. so intrigued by it really! Thank you x

  • Hi Louise

    Lovely to see you contributing (Loved the hash correspondence) and just to tell you my spleen was 24cm but Rux brought it down. It was 8cm last check a couple of months ago. The fatigue still grabs me but generally I am good.

    I was up at Guys for my three monthly (yippee that I can say that instead of 8 wks) last Monday and I always look out for you. You will get reassurance from the Prof without doubt.

    Bump into you soon

    Linda x

  • Thank you Linda. Cool that's good to know. 8cm wow a huge difference, which then makes me think what size is our spleen supposed to be or is every body different like with many things, no two people are the same unless they are twins or triplets etc, etc... (you get my drift)..

    Ah shame we have not crossed paths for a little while now, but we will. Yes I am sure Prof will guide me in the right direction as always.

    Take care, x

  • Thank you sunnygirl and everyone else. It certainly is a struggle isn't it. I've just had an ultrasound re spleen. I am exhausted not helped by being post viral and a long me/cfs history. I hope that in the future I will be able to offer advice from my experience. At the moment this space offers me consolation in the sharing by fellow mpn'ers. Thank you again. Mal x

  • I love you called me Sunny girl.. I like that! I might need to use that.. I am definitely always trying to see the positive in any given situation :) Sorry to hear you have suffered too and that you have had ME/CFS that's awful! Definitely, I was even thinking when I have time to write a blog about living with cancer! It's good to share experience and offer each other support. Big love Lou x

  • Oh I like the Sunny Girl too = Mal is right!

  • Hi lou. Perhaps you could change Surrey girl to sunny girl. I like it. Mal x

  • Maybe I should :) x

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