Morning all,
Just received some paperwork stating that my Spleen is palpable at four fingers breadth below the coastal margin. Can anyone tell me what this means? what is the coastal margin?
Getting a little nervous now as my next appointment is Monday for full diagnoses and treatment plan(hopefully)
Thanks in advance.
Barry
Hi the link below might be helpful. The costal margin is the outer edge of you rib cage. I hope you the the answers and treatment you need.
All the best
Susieq
Barry
We all empathise here, having been through the process ourselves. I’d suggest you prepare a list of questions and perhaps take a recorder if not going with someone. Obviously ask for consent to record but I’m sure the Hem won’t mind. Many actively encourage recording since there can sometimes be a lot to take in.
Do you know your RBC, WBC and Platelets counts?
Best Paul
Hi Paul,
I will prepare a list, my better half will be coming with me, I'm thinking of asking her to jot down some notes for me which will could be helpful. Not sure about recording it but will maybe ask if that's something they wouldn't mind.
I don't know my counts at present as my FBC was more or less normal on the last visit around 5 weeks ago. before I know the Red Blood count was higher than normal, I have paperwork saying my HTC was raised at 0.53, but I'm not sure that's a typo as I am convinced I remember it being 0.58 then again my memory is shot to bits at the minute. the counts are all very new to me at the minute and don't make that much sense I'm afraid. before the BMB there was talk of possible progression which has lead to change in numbers.
I'll post them up as soon as I know. so is Grade 3 Splenomegaly and thought to be an intermediate/advance grade. from what I had read my understanding was that enlarged spleen is more of an advanced stage thing, of course, I could have totally misunderstood.
Thanks for your replay.
Barry
Barry
Quite a few PV patients have enlarged spleens. Hopefully good news that your bloods were normal at last count. I assume you are reading up on treatment options just in case.
The two principal drugs, HU and Pegasys, are both effective. HU generally works a bit quicker and is more easily tolerated. Pegasys (Interferon) offers (possibly) more chance of slowing progression but this is a matter of enormous debate amongst our Hems. Possible long term side effects versus possible slowing of progression.
I’ve gone for low dose Pegasys and very pleased with it but we all react differently to these drugs. My thinking was, if it works for me, then (unproven) chance of slowing progression. If I can’t tolerate it, can try HU. Note Pegasys better tolerated than Interferon.
Best Paul
Hi Paul,
I have read lots, understand little, but more each time I read. It's totally new, I honestly just took for granted that my body created blood cells hadn't even thought about where they were created. I have been reading up on treatments and there does seem to be a divide between them as far as choice is concerned. I guess like you say if its needed try one and see how it goes.
I'm glad Pegasys is working well for you, I hope it continues to do so, I guess as for me I'll know soon enough what's wrong and hopefully, the Haem will already have a plan of action set out to start with.
Cheers
Barry
Hi Barry. My spleen is also around that size. Had it measured last month and get the results on Monday. A large spleen can be a sign of progression. However I was also told that sometimes a spleen can be very large and as long as it’s not growing then it can be just one of those things. PV patients often have large spleens. I have ET which is why Doctors are confused/concerned although my bloods are pretty normal too (slightly raised platelets around 500, haemoglobin high by within normal). Good luck with everything!
Tim
I notice you had two different BMB results, I assume from same test but different labs? I had the same last Dec. My local said ET and Guys said PV or MPN-U. My bloods flagged high (500) Platelets in 2013 and RBC/WBC/HCT joined the party in 2016.
I’ve had my genetic tests back, only +ve for TET2 (about 15% of PV are TET2). The article I recently posted re genetics has great table showing the risk % of bad mutations. If you are ET, your risk very low.
One study indicates that TET2 might inhibit Peg but my haematological results so far have been excellent. The $m question is molecular response, will get another AB test next month. Was 75% last time.
My spleen is top end of normal.
To conclude, I’m semi convinced that I have pre PMF and MPN-U is a friendly euphemism. Probably doesn’t make a great deal of difference since blurred boundaries. However it was a factor in persuading me to start Peg, together with Dr Silver discussing venesections.....
Best Paul
My local said cellular phase MF after seeing the BMB but I transferred and my new diagnosis came in as ET. It’s confusing but the new docs are MPN specialists rather than general haem and were initially open to the idea that it could be PV. Only after they saw the BMB slides did they say that it was more like classic ET. Which surprised me a great deal. They are still monitoring closely over this year for any signs of changes. No genetic mutations were found in the Next gen sequencing beyond Jak2 (40% burden). I’ve thought of Guys too but not got the energy for another transfer at this stage and seem to be in knowledgable hands at the moment.
Hi. The anxiety and confusion you’re experiencing right now will be familiar to just about everyone on this Forum. Been there, done that (done it again!). Am assuming you’ve checked out the MPN Voice website. It cuts through a lot of the Google guff out there. You’ve got some useful info about spleen size from others. Great that you have someone going with you to the next consult. Hope you come out with a better understanding and A Plan. Good luck.
Hi Ebot,
Yes thanks the mom voice site has been a great source of accurate information. Google is actually quite scarily out of date! At least with some of its data. The misses is a PA so should be quite handy for taking notes so long as she can keep from bubbling! I’ll post up results when I get them.
All the best
Barry
Barry - your enlarged spleen could be an MPN as others have indicated. My spleen was ‘four fingers’ and my MPN diagnosis was Myelofibrosis for which I had a successful stem cell transplant seven years ago. I say this not to worry you but just in case this diagnosis turns up, to show it is not that scary. Myelofibrosis is very rare and your diagnosis could well be PV or ET.
Having your wife taking notes is good. I hope you also have a list of questions written down to tick off as you ask them so nothing is missed in the consult. I tried to record my initial specialist on the basis that she might use unfamiliar words that I could look up later, but she refused. In my view a good confident, specialist wouldn’t refuse. I eventually moved on to someone far better. Good luck with your appointment. Whatever your diagnosis there should be someone here to help
Please start a new post with the outcome as, unlike Facebook, there isn’t anything here to alert readers to an update to an original post.
Best wishes
Chris
Hi MFBMT2011 (That was a mouthful). If only I had read this post backward eh Chris 
So great to hear triumphant stories like yours so thanks for sharing!
I am, of course, hoping that it's not MF but if it is its good to know that there are options but I believe they are still a little scary as it's not 100% guaranteed.
She certainly does come in handy sometimes, plus it may help as she may not be taking it in from concentrating on getting it down on paper which will be a good thing. I understand what you are saying but also understand why a professional would not like for conversations to be recorded as sometimes we all say things we don't mean or say them not quite how they intended to come out leaving themselves liable.
I will start a new post when I get the results. especially if it can help in some way.
Thank you for your support its much appreciated.
Hi Timjonze,
Thanks for replying. The spleen is the biggest problem I have symptom wise at the present as everything else has settled down. Does it give you mug gip? It would be unusual I’m sure to have had PV/ET and have it progress without even knowing you had it or is this more common than I’m thinking being asymptomatic for quite a time. It’s really hard to tell what could be down to the illness and not just the aches and pains of age creeping up on you. Fingers crossed for you, hoping your PV isn’t progressing!
Barry
Do you know what your Allele Burden is? This is the % of mutated JAK2+. Your Hem should have the % so I’d definitely ask if you don’t know.
Normally ET is very roughly around 25%, PV around 45% and MF 75%. However I’m PV/MPN-U and was 55% Sept 2016 rising to 75% last March. On other boards there are PV’ers with near 100% AB so very broad brush.
My reading is that over 50% AB increases your risk of progression but to what degree is another matter of debate amongst our Hems.
High AB is associated with inlarged spleen but also increasing WBC which you don’t have?
Best Paul
Hi Paul,
I don't know what my Allele Burden is! but I now know to ask thank you. interesting info about % rates for deciphering what MPN I may have, it could also help with understanding the stage it may be at. I did also ready the high WBC could produce it but like you said the counts didn't add up. I guess many other factors have to come into play also.
Cheers for you r input
Agreed I struggle to distinguish between symptoms that are down to my MPN and symptoms that are through anxiety. My spleen comes and goes - I’d never noticed it until diagnosis which makes me worry it’s growing as I regularly feel it now. But again that could be psychological as I focus on it a lot more now. It doesn’t give me any pain but can be a bit uncomfortable sometimes. Sometimes it’s like stitch, sometimes it’s like a little pinch under the ribs, sometimes it feels like there’s a mini football sitting in my stomach when I sit down. But some days it’s barely there at all - can’t feel it at all now for instance. Nervous about Monday when I find out if it’s growing or not.
I can totally agree with all of that Tim Jonze, its never the same from day to day. for me it often aches like you say similar to a stitch. Fingers crossed for you, hoping it's not grown too much, more that you are just aware of it! if it has hopefully they can give you some treatment/meds that will reduce it.
All the best for Monday try not to let it ruin your weekend, I'm not going to let my anticipation ruin mine! especially when the suns shining
I have a growing spleen now ,,it's been 6 years since diagnosis ,,
Going Friday for ultrasound .so the haematologist can see the size .
It's about 15 cm . I am told ,. Well ,yes I worry ,it's not good news ,
Been on trial drug ruxulitnib for 4 years ,,I was originally on the majic trial .
Keeping on a fresh food healthy diet has kept me healthy ,never eat processed food ,no cans ,. No fizzy drinks at all !! No alcohol at all ..
I'm still feeling o,k,. But have had phneumonia again in May ...
Hope you have good news from your doc !!! Twinkly ..xxxx
Hi Twinkly,
Thanks for replying. I thought from most of what I have read that ruxolitinib was one of the things that could reduce the spleen quite quickly is Jakafy not another name for ruxo or am i getting confused? still trying to get my head around it all.
I think diet must help with daily health problems which can only help with dealing with the unpleasant effects of MPN's.
Sorry to hear of your suffering of pneumonia, hope it clears up soon!
All the best
Barry
Ruxulitnib has kept me stable as I said ..it's very recently it's noticeable my spleen has started to grow as if by majic !! I'm not fighting infections as well now as I have done for the last 4 years .im hoping after my ultrasound investigation my specialist team at the hospital will come up with a new idea ,to control these latest changes ...all the best to you .. Twinkly ..xx
Thank you to everyone for your replies and support! I’ll try and reply later after work. 😀
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