spleen

[artydutch]

Does anyone know how fast a spleen enlarges in MF. Is this weeks, months, years?

[JediReject]

I can only answer based upon personal experience. On diagnosis mine was palpable some 6 to 8 cms below rib cage and best guesstimate was I may of had MF a year or so at that point. During the next 8 to 9 years and prior to SCT my spleen was about 21 cms. So it must of expanded quite rapidly early on but maybe the Hydroxycarbamide slowed it down over the intervening years because it grew only 13 cms. Alternatively maybe it simply reached its optimum length for me but increased in volume. And one needs to take into account it's volume which is what extends or bloats the stomach so much.

My spleen post SCT remains much the same length wise just past naval, except it is now much flatter like a bladder instead of a rugby ball so is far less obtrusive or uncomfortable.

Sadly as I've mentioned before Ruxolitinib which I took for around 14 months didn't have any impact in shrinking spleen but may of slowed it's overall growth but no measure was available.

I'm sure others can help with their experiences.

Regards - Chris

[Scaredy_cat in reply to JediReject]

Interesting info on your spleen and sct. My spleen was a similar size to yours and I had to stop ruxolitinib because my platelets became too low. Just before my sct last January they attacked my spleen with radiation because it was thought a large spleen would hinder the sct. I don't know if any of my spleen survives but you certainly can't feel it any more.

[christiev]

My son, diagnosed with MF at age 18 is now 27. He has no treatment - just watch and wait with lots of monitoring from Guys Hospital. His spleen has meanwhile grown and shrunk and grown again! All very unpredictable… I imagine that each person experiences an individual pattern. His spleen is currently not palpable but was so a year ago. Not sure this is helpful to you other than to demonstrate that other’s patterns may not be predictive if yours?

[Dodders]

I was diagnosed with post PV MF in October 2017, although with hindsight I was symptomatic from earlier in the year. I would say that from that time until my STC in June 2019 my spleen enlarged from a few centimeters below costal margin to a couple of centimeters below my navel. During the initial period I was taking Rux it stabilized, but I had to stop the Rux and it then enlarged fairly rapidly. I believe that my MF progressed quite rapidly and that maybe affects how rapidly the spleen enlarges?

[JediReject in reply to Dodders]

Yes I agree , , it would appear your spleen enlarged commensurate with your very active MF, whereas mine was not quite a slow burner but more on a meduim light. Some can live with MF over 20 years so maybe their spleen growth over a long period is incremental rather than monumental. There's probably no set types as such and it will remain variable for most depending on a number of factors. As an aside when I had transfusions particularly platelets it was thought my enlarged spleen was soaking them up like a sponge as one night my platelets were 10 but I needed a procedure the next morning where i would bleed a bit so I had 3 or 5 bags of platelets that night and in the morning a test prior to having it showed my count was still 10.

[jointpain]

My wife's spleen was removed on May 1st 2018 after a fall whilst running, it was six times the normal size, when it burst at the age of 60. This is when she was diagnosed with an MPN (MF) she has a photo when she was @40 in a bikini showing the outline of her splenomegaly, her ribs on the left side are also splayed a fair bit, so we presume she has had an enlarged spleen virtually all her life. She was being seen at hospital when aged around 7 years old for unexplained bruising, but it was never followed up. So to answer your question of how fast a spleen can grow. We don't know.

[BloodZero]

In my case weeks.