Considering ruxolitinib for MF

[Pte82]

Now 75 years old, oncologist recommending ruxolitinib for MF. What was your experience?

[Ettiel]

Hi Pte82,

I was diagnosed with Myelofibrosis (Post PV) in September 2019 and put on Ruxolitinib. I had lost a lot of weight due to enlarged spleen and had lost my enjoyment of food and generally felt very unwell. Ruxolitinib has been a lifesaver. I feel so much better. It reduced my spleen size and I’m eating healthily again and enjoying it; the itching on my limbs has almost disappeared and I feel quite well - almost back to normal. I must admit though I still suffer from fatigue and can become exhausted very easily. I started on a small dose which was gradually increased. I am currently on 15mg twice daily.

I would strongly recommend taking it.

I wish you the very best of luck if you do take it and hope you may have a similar experience to mine.

Ettiel

[Pte82 in reply to Ettiel]

Ettiel, that covers a lot of the water front. Has it stopped or relieved bone pain especially in the lower legs?

[Ettiel in reply to Pte82]

Sorry, I can’t help with that one as bone pain is not one of the symptoms I experienced. I think, btw, that Steve is right and it’s best ultimately to be guided by your own medical team.

[socrates_8]

Hey Pte...

I pretty much echo what Ettiel has said before me...

Ruxolitinib was a life-saver for me, and largely gave me back some semblance of my previous Quality of Life (QoL).

Best be guided by your own medical team all the same...

Best wishes, stay strong & healthy...

Steve

[Pte82 in reply to socrates_8]

Were you told to come off all supplements while using Ruxolitinib by your medical team?

[socrates_8 in reply to Pte82]

Hey Pete...

In the beginning I was not taking regular supplements...

However, I now do and that does seem to aid my QoL.

My Vit. D was always very low, even though I am always outdoors etc.

Since starting a Vit. D supplement, those levels are now back in the black, and maybe it helps my fatigue just a tad too (?)

Today, I take a Multi-vitamin, Vit. D and a B complex every other day or so...

Hope this helps...

Best wishes, stay safe & well...

Steve

[skipperL]

I can only echo everyone else -I am 81 and have been on Ruxo for 18 months - no more sweats, itching , nasty symptoms , feeling human again. Apart from anaemia and regular transfusions I feel almost normal. The only worry is that I have heard the benefits only last for several years which scares me. Good luck with your treatment. SkipperL

[Pte82 in reply to skipperL]

skipperL, was told if Ruxolitinib was not tolerated would be switched to Fedratinib.

[tracey13]

My husband started ruxolitanib in February last year it's been really good for him . He's not suffering exhaustion half as much all his bloods are in range.

He did put two stone on but he's now calorie counting and almost lost the 2 stone.

In all its been a life changer for my husband he started off with PV now he's post PV MF .

He has a good quality of life now.

It's such a shame this horrible virus is going around.

[Pte82]

tracy13, weight gain would be welcome. Spleen is below navel and is pushing on stomach and intestines.

[tracey13 in reply to Pte82]

My husband's spleen was 22cm it's come down to 15cm with the ruxolitanib . He's had two scans and the spleen has measured 15cm both times with about a 7mth gap x

[Pte82]

That will be a big help. Thanks

[Dodders]

I was prescribed Rux at the end of 2017 having transitioned form PV to MF, and it worked very well for about 6 months. The spleen shrinkage seemed almost miraculous. However my blood counts dropped and dropped and even though my Rux dose was correspondingly reduced it eventually stopped being effective. I opted to try Pacritinib via the trial at The Christie in Manchester at the beginning of 2019. The only real benefit I got form that was no more night sweats. As the other replies confirm Rux can work very well. Good luck.

[Pte82 in reply to Dodders]

Dodders, did your spleen shrinkage remain with Pacritinib? Putting night sweats to rest is reason alone.

[Dodders]

My splenomegaly remained unchanged with it extending about 7 inches below my costal margin i.e. below my navel. It may have slowed or stopped the growth but I finished the trial early to have stem cell transplant.

[Pte82]

Thank you. The stem cell transplant offers the best path out of this neverland.