Ruxolitinib plus Pegasys for MF: anyone else on this combination? Oxford meet up.

[Rachelthepotter]

Hi. Its a while since I posted: I have MF, and moved to Oxford a year ago. Am taking ruxolitinib, and for the last month pegasys as well.

Would be interested to make contact with anyone else taking this combination

I’m sending this post while sitting in the university parks on a shady bench. if there are people who could easily reach the centre of Oxford, the university parks are in the open air they have a lot of shady benches, interesting flowers and all in all could be a good place for a suitably socially distanced meet up. We could bring our own pic nics. If anybody is interested in the idea, do post here and we’ll see if we could maybe sort out a day when we could get together for a walk and talk. Or just get be in email contact.

Lots of love

Rachel

[Lab-Rat]

Hi Rachel, I take 20 mg Ruxolitinib (Jakavi/Jakafi) per day plus monthly 90 mcg Pegasys. What’s your treatment regime? How do you find the combo working for you thus far? I find that Jakavi minimises side effects from Pegasys. Oxford sounds lovely, we have entered winter here in South Africa.

[Rachelthepotter in reply to Lab-Rat]

Hi. I take 15 mg rux twice a day, and 45micrograms Pegasys weekly.

Its odd that I’ve been prescribed Pegasys weekly, and you monthly. Must check the box. I did, and its once a week.

I’ve been taking the combination for a month now, and feel good on it. The rux triggered a nasty skin cancer, which recurred, ( sarcomatoid squamous cell - grew fast).

Not sure if the game plan is to taper down the rux now that I’m taking Pegasy,s. Its only been a month so far.

All the best

Rachel

[Inca in reply to Rachelthepotter]

I am like you Rachel..going into hospital to have a carcinoma taken off my lower left eye lid.....second time since Rux ,Hydrea 11 yrs Had them then on leg chest shoulder....Sure all these Meds cause the skin cancers,

Worried about the op tomorrow as its eye lid,so nasty and ugly!

Hope your move to Oxford is better for you,very best on the new mix of treatment,hope for you it lessens the skin problems,they are just horrible unsightly and knocks confidence.Good Luck. Sally

[Stevesmum42]

Hi Rachel. Good to ‘see’ you. You sound well and content...I would love to join in a picnic in the park, but rather a long way from south Devon .....!!!

Sorry can’t help with the meds question, I just wanted to say hello back to you...I hope you get lots of local response. Sounds like a perfect place to meet up.

Love Sandy xx

[pontygirl]

Hi Rachel,

Good to hear from you, sounds idyllic there in Oxford & how nice that would be to meet other members..

I would love to join you, but I’m in Weston super Mare, Somerset..

Just a tad too far for the idyllic picnic suggested..

I have wondered about you these past months, between Covid19 and Lockdown we became a tad insular in my opinion..

However I believe the Gardens have prospered with all the attention given throughout April/May with the glorious weather..

Occasionally too hot for me, but very lovely to take morning tea in the garden, which I have spent many hours planting..

I have some glorious Cannas Red & Golden Yellow, Foxgloves, and 3 Hidcote Lavenders well established and a lovely Rose from David Austin to plant later, in the cool of evening..

I can see a quiet day ahead for tomorrow after today’s endeavours.

Rachel I am glad to feel that you are happier with regards to the Drug Therapy..

When I read of your SSC you had my sympathy.

Ruxolitinib does worry me for that very reason, I am about to start taking Rux come late August when my lovely Haematologist hopes to be able to see me regularly to monitor my progress...

Hydroxy has its issues, when reading your account of SSC, made me question Ruxolitinib seriously.

I did commiserate with you, and mentioned this to my Haematologist.

Yes I’m aware that HU can create situations too, but the speed of your SSC worried me for you, and myself...

I hope the combination you are now on keeps you well and free from such issues of SSC in future..

One needs to be vigilant at all times, my husband is very fair and I very quickly picked up on a Squamous Cell Carcinoma (SCC)

just beneath his eye socket 3 years ago..

It was removed very quickly by a wonderful Surgeon by the name of Mr Tom Cobley 😊

Hubby now wears a Panama or Linen Flat Cap which he detests both..

One cannot take chances in my opinion, Sunshine can be dangerous...

Well you sound good and upbeat so I’m guessing things have gone well for you, which is fantastic news..

I hope you do get some folk for a meet up, sounds fabulous to me...

I would like something similar down this part of the world..

Steve in Oz does “Cafe Catch Ups” until Covid19..

Eventually given enough time things will get easier for the world..

Take Care, Enjoy the Day..

Maria 😊

[Inca]

Hi Maria ,

We all seem to have been in our own worlds lately.Hopefully it's getting a bit better now.Re the Rux,it's scary for me now....the carcinoma worry,the

one I am having removed from eyelid tomorrow was a small thing ,then op cancelled with Covid shut down,now it's grown in the few weeks to a nasty,ugly ,thing.

Yes ,I think ,blonde fair skin,blue eyes as I am,makes it more likely.

I always cover up,have never been a sunbather,tho had an outdoor life always.

Must say tho that Rux is working for my blood better than Hydrea did in 11 yrs.Had carcinomas with that too....what do we do ????!

Glad you are ok,keep well and safe .Sally

[pontygirl in reply to Inca]

Hi Sally,

Really good to hear from you, so sorry to hear about the eyelid situation...

Yes Covid19 has taken its toll in many areas of healthcare sadly..

However we must be grateful if one’s family has not been affected by Covid19...

So many families have lost loved ones..

Yes fair skin, hair & blue eyes is a magnet to the affects of the sun..

As you said if one is outdoors that proves difficult..

Hubby has never been a Sun Worshipper, I am dark haired and tan easily, but I am very careful.

Good to hear you are doing well on Ruxolitinib, yes HU has it’s issues too..

For me approaching 2 years on HU come July, it’s a question of better the devil you know attitude...

Reality is, I will be starting Ruxolitinib with bated breath..

I resisted HU from March through to July, hoping to gain control of my Platelets without Drugs...

Eventually my Nurses head ruled my heart and I commenced HU in the July..

In reality I didn’t do myself any favours by delaying HU.

It took a while to gain control of the Platelets..

Now I simply take the Drugs and get on with life as much as possible..

Rux will be the next chapter of my MPN story..

I hope all is well with your family in UK and you are both okay there in France..

One day we will have some kind of normality return to life..

I must admit that the skies have been wonderfully clear here, beautiful Azure Blue and wonderful Bright Stars & Moonlight at night.

Just maybe we have given our planet a well earned rest..

Take care of yourselves, stay safe and hopefully it will not be too long before the eyelid is sorted out for you, fingers crossed 🤞

All the Best to You

Maria 😊

[Inca in reply to pontygirl]

Hi again Maria,

Op done yesterday,today I am wrapped up like an Egyptian Mummy....

Face that is,tiny hole to see out of right eye. Nurse every day now for 10 days morning,noon & night to do dressings.....had a top surgeon in Toulouse so hoping I don't look too ghastly eventually. Second time for major surgery for carcinoma.....wish the consultants would advise better for exposure to any sunlight,not just strong sun,just daylight full stop,or so the surgeon and nurse tell me.Really want to warn all MPNers,pain I am in now ,I do not want anyone else to suffer.Hope this mail is readable,thru my tiny eyehole hard to see,and can't wear my specs!!!

Cheers to you,thanks for your kind reply.Sally .

[pontygirl in reply to Inca]

Hi Sally,

Glad to hear you have had your Surgery, but sad to hear you are in pain and trussed up in bandages etc..

Good to hear you have a Nurse calling in daily to do dressings etc..

I hope you will soon start to feel improved and looking forward to your eye being completely recovered.

Here in Somerset we have torrential rain, been like it since early hours..

The upside is I very much doubt we should have a Hosepipe Ban which was being considered after the very dry April & May..

Sadly the warm weather has deserted us, as you know all too well April & May could prove to be our Summer!

How is hubby doing without your assistance with the animals etc..

Hope all is well with your family here..

Stay Safe and continue the Recovery as best you can Sally..

We will chat again soon, keep up with the good recovery plan.

All the Very Best

Maria 😊

[JackLina]

Oh, what lovely thought. I so wish I lived in easy reach of Oxford. I'd be there in a flash. only take Pegasys and Clopidogrel, so I'd be no use to you but I'd be very happy and relaxed.