Enlarged Spleen

[billybrock]

I have post Pv Myelofibrosis and am on Ruxolitinib. My blood counts are good except for a white cell count of 21. However, my “blasts” are at 18%.

I am not experiencing any major symptoms except for an enlarged Spleen that currently measures 28 cams, which is large.

The Ruxolitinib is not reducing it, and it is now very painful. I cannot get comfortable and cannot sleep. My appetite is also affected and I cannot cleat my plate.

My biggest fear at the moment is that the Spleen might rupture and that might be the end of me, with the internal bleeding associated with a rupture.

I have googled, as you do, and found reports that state the alternatives on offer to reduce the Spleen size.

Additional medicines such as Interferon and Thalidomide are suggested to complement the Ruxolitinib. Radiology is an option or in the worst case, having the Spleen removed surgically.

I have a telephone consultation on the 19th April and will discuss the options.

In the meantime, has anyone had similar issues and how was it resolved?

Many thanks

Billybrock

[Paul_1971]

Hi

Im on Rux and havent had success with reducing spleen size. Mine is around 22cm but fortunately doesnt cause me to many issues from a comfort perspective, although it is suspsected its responsible for my varices which bleed at times.

I believe Radiotherapy can work but is a one time only treatment (someone may correct me) and it is a temporary fix.

All I would say is if discussions are held re removing your spleen get some good advice on it as the reason its enlarged is its doing a job, remove it and other organs like the Liver take over and can become enlarged too.

Hope your appointment goes ok and you get some answer.

Depending on what dose of Rux you are on, increasing the dose may be an answer.

Paul

[billybrock in reply to Paul_1971]

Hi PaulThanks for your response.

My Haematologist increased my dosage of Ruxolitinib from 15mgs twice daily to 20mgs twice daily. Been on the new dosage for 6 days. So need to see if it helps.

Billybrock

[Paul_1971 in reply to billybrock]

fingers crossed for you.

[billybrock in reply to Paul_1971]

Thanks.

[hunter5582]

Sounds like you may already know this, but am thinking the next step would be combination therapy with PEG-IFN. Would certainly want to consider that or the other medication options first. There are also meds in clinical trial you may want to talk to the MPN Specialist about before considering radiation or splenectomy.

I hope you find a solution soon. Please do let us know how you get on. You will be in thoughts and prayers.

[billybrock in reply to hunter5582]

Many thanks for your reply. I will speak to my Haematologist about the Peg-IFN.Billybrock

[DJW1]

Hi Billy, My understanding is that blasts at that level are getting dangerously close to levels that indicate a move to AML. You likely should discuss that with your specialist.

[billybrock in reply to DJW1]

Thanks for your reply. I will discuss the blasts level with my Haematologist. It has fluctuated in the past. But only between 2% and 8%. Not sure why it jumped to 18%.Could the Pfizer vaccine have had an effect, I wonder?

[Ettiel in reply to billybrock]

Hi Billy - I also have post PV/MF and had an uncomfortably large spleen. I was put on Hydroxurea originally which didn’t work too well and then on Ruxolitinib which, fingers crossed, works very well for me. I was on 15mg twice daily at first but when spleen started enlarging a little again I was put on 20mg twice daily. This is now working very well for me for the past year. If I were you I would give the Ruxo a little more time to see if it brings about a reduction on your spleen. Six days is quite short. I think changes for me only came about after a couple of weeks. I really feel for you as an enlarged spleen can be so uncomfortable. Don’t forget there are other, newer meds that could be tried in combo with Ruxo eg, Federatinib and others which should now be available in the U.K. very best of luck Billy,

Ettiel

[billybrock in reply to Ettiel]

Many thanks for your reply, especially as we share the same conditions.It is good to hear your increased 20 mgs has reduced your spleen size. I will persevere and hope it works as well for me.

Billybrock

[jointpain]

Hi Billy, my wife a slim woman, had her spleen rupture nearly 3 years ago, she had no idea she had MF at the time, or that her spleen was around 30 plus cm. Her white cells are around 20 these days and her platelets are around 270 to 370, down from 1.9 million. She lost over 3 litres of blood while her spleen was bleeding, and had it removed. I think a Splenectomy is or was an option before the drugs that shrink spleens. She has to have penicillin each day, otherwise she is fine taking anagrelide and hydroxycarbamide.

[billybrock in reply to jointpain]

Oh dear! What a shock surprise for your wife. Hope she is well and coping now.I was on Hydroxicarbamide when I had PV but was taken off when I transgressed to MF.

Billybrock

[jointpain in reply to billybrock]

Hi Billy, we think she had ET and or PV for years before her spleen ruptured, we have a photo of her in her thirties which shows a swelling which can only be her spleen! Then in the few years before the rupture she had purple toes and cheeks quite often. She doesn't get these anymore.We see the consultant tomorrow 😁

[billybrock in reply to jointpain]

Good luck for tomorrow.