PV and just confirmed I've now got an enlarged spleen

[littled]

After several months of upper abdominal pain, was finally sent for an ultra sound scan, it's confirmed I now have an enlarged spleen, now waiting to see my haematologist next week. Not sure what to expect and how to help the pain in the meantime it's a little worrying to be honest, would like to hear from others who have had this just need reassurance more than anything.

[Aime]

Hi littled, sorry to hear your spleen is enlarged. I have upper abdominal pain but was told after ultra sound and ct that spleen was fine. I do have PV. I am sure some of the rest who have an enlarged spleen will reassure you. My haem checks for spleen enlargement by physical exam every 3 months or so. Best wishes Aime

[ilc72 in reply to Aime]

Hi Aime

Only an ultrasound can give a definitive check since abdominal exams aren't reliable indicators. I had a physical exam recently to be told it was fine, I had an ultrasound and it had grown >50% in 12 months.

[piggie50]

Hi Littled, I have an enlarged spleen diagnosed by an ultrasound. It does not cause me any pain, sometimes I am just a little uncomfortable if I eat too much or am bent over my desk with my posture not very good. I hope you can get some relief from the pain soon.

Judy

[jane13]

hi, me too. Spleen still enlarged but I have been on hydroxy for a couple of years and has reduced in size. hope they sort for you, jane

[ilc72 in reply to jane13]

Hi Jane

Was Hydroxy specifically to reduce the spleen or for other purposes. My venesection frequencies are quite high and was wondering about Hydroxy as an alternative as my HB and HCT remains elevated with low MCV and MCHC. As a result my consultant is refusing further venesection until the red cells are more mature.

[jane13 in reply to ilc72]

Hi

I started Hydroxy due to high/rising white cell and platelet count despite venesection: hydroxy has reduced these and therefore the associated risk of stroke etc. I was advised that the red cell immaturity issue you've mentioned was another good reason not to have more frequent venesections. Also told that hydroxy can give some protection against going on to develop myelofibrosis as the hydroxy slows your bone marrow down and reduces the scaring that I understand causes MF.

I now have venesection about every 2 months and 2 tablets of hydroxy per day: I try and keep a balance so that I don't take higher levels of hydroxy (yet) as it may be a carcinogen over a long time at high dose.

Am a bit bothered about why you are in this situation: didn't your haem discuss hydroxy or similar with you before you got in this state? Is there some reason you aren't on hydroxy? and what about your thrombo/stroke risk now if you are walking around with high cell counts? Get in there and demand answers and options!!!!!! sorry

[ilc72]

I think to be honest he's uncertain what to do!

At first it was thought I'd got PRV, however tests for JAK2 and EXON12 mutations were both negative. Also my EPO is high, not normally consistent with PRV where it it low/normal. At the moment it has been laballed as an Unclassified Myeloproliferative Neoplasm.

I have had two Trephine Bone Marrow Biopsies, one of which showed signs of PV but was atypical. I am due for another next week which may shed some light on things.

My blood pressure has become very high since diagnosis ar 160-180 Systolic and 110-130 Diastolic and resting heart rate has increased to 100. This has begun to cause secondary damage to the heart yet is not responsive to hypertensive medications. As soon as I walk, even gently, my HR increases to 140+ and is slow to return to normal

Also spleen has almost doubled in size from 7cm in May 2012 to 12.5cm in June 2013.

I'd like a second opinion from someone like Professor Harrisson but not sure how to get referral. I can see her either privately or on the NHS.

[MFBMT2011 in reply to ilc72]

Regarding second opinion, tell your specialist/hem that you would like one with a Myeloproliferative specialist like Professor Harrison and this should be on the NHS. Diagnosed with MF, I was unimpressed with my Hem but at least she suggested I went for a second opinion before I had to ask for one. It took me from pallative care suggested by my Hem to an SCT following discussions with the Prof. You are targetting the right person as there is no-one better.

[sutherland]

I have PV with an enlarged spleen. It comes with the condition. 12.5 cm I would certainly not consider large. From the consultants I have spoken with, when the spleen is over 20 cms there may be some concern. Even then unless the patient is in some discomfort, it is likely they will take no action.

[littled]

Hi guys thanks for the updates, the doctor said it was 14cm atm, but now the pain has also started in my lower left side trying to sleep is hard, will hopefully get some relief when I visit my heam on Monday. I'm tempted to try hemp oil I've read its supposed to be really good for pain relief but will ask the doctor first.

[Aime]

Hi ilc72,

Like Jane13 I am bothered that you have so many problems/symptoms and no one seems to be doing much about it. Please ask for second opinion as soon as you can - you should not have to carry on feeling as bad! It is interesting because as I said before I am Jak2 negative and EPO is high also. I have emailed you from home if you would still like to buddy up. Best wishes Aime

[MichaelS]

Hello 'ilc72', I had PVR for several years - starting in 1983, I was put on Busulphan and then changed to Hydroxy pretty quickly with accompanying venesections. My spleen was large when diagnosed and I wondered why sleeping on my left side was uncomfortable! The spleen, along with the blood counts, have been managed over the years by Hydroxy, but it is often uncomfortable and I am now getting occasional pain with it and also the liver. I was diagnosed with MF about 4 years ago. I was at the Haemotology clininc two weeks ago and the consultant said that he would try to get funding for me to have the latest drug 'Ruxolitinib', but since then, having read the latest information from NICE, I rather doubt it will happen. In the past, if the spleen was very uncomfortable, I would phone up the Haem and they would tell me to increase the Hydroxy for a week or so. This seemed to work very well. One time it was only about an inch (2cm) away from my navel, but it reduced quite quickly with the Hydroxy. I think that you ought to see a commited MPN specialist.

Best wishes from Michael

[littled]

Hi all, just been to see the haematologist today, he said my platelets have increased but said I shouldn't be getting pain as I am and doesn't think it's connected to the spleen. He's given me a high dose omoprazole to try and if after two weeks its not settled I've to stop taking my clopidogrel and see if that has any change. I go back next month for review.

[Kisses in reply to littled]

It's all trial and error with these meds I had a splenic infarction of 4cm last week was put on morphine it made me vomi big time my spleen is 14cm and was causing me pain my doctor assumed it was IBS and put me on omeprszole only my heamotologist thought different gave me a scan and there was the evidence an infarction