Myelofibrosis - changing dose of rux and epo helps the fatigue

[Rachelthepotter]

Hi

I thought it was time I wrote an update post, as well as replying to others.

The good news is that I’d discovered that changing my dose of ruxoltinib ( Jakafi) back to 15 mg bd ( it had been increased to 20mg bd from the new year, and that increase made me gain another 5kg in weight ( gaind that Instarts on rux - most people do, I was told ) and made me even more tired.) and inceasing the frequency of the epo injections ( Aranesp) from every 4 weeks to every 3 weeks has improved my energy levels and made me feel more like myself. Which is great. My oxygen sats were 98% briefly, which is the best they’ve been since I had a blood transfusion.

I’d had a chest infection recently which had responded to doxycycline, and I’d discovered that an electric bike I’d used on a holiday I’d been on for a few days in Northumberland over the May bank holiday was great fun, and enabled me to get some outdoor exercise without getting shattered.

However, I also had a lesion on my cheek that had been growing rapidly since February, and when I managd to arrange for that to be checked out ( an anxiety provoking non user friendly process) it seems that it’s likely to be a potentially metastatic squamous cell carcinoma. I’m seeing a skin cancer surgeon in Guildford on Monday evening ( 20th May) and she’ll be able to tell me what’s the best way to treat it. Bloody hell. Could do wihout that.

Now that I have an appointment fixed I can get on with enjoying May in England, which is a beautiful time of year - we have bluebells here, under the beech trees which are just coming into leaf.

Haven’t done much pottery recently, but am about to head out to the workshop and try doing some throwing. Love to all

Rachel

[mhos61]

Hi Rachel,

a bit of a mixed baggage by the sounds of it! How wonderful though that you have more energy levels, your positivity is evident in your post.

I think a couple of MPNers on the forum have had squamous cell carcinomas removed. I hope it’s not too invasive if it comes to surgery.

Yes, May in England. There really is no place like it, especially on a day like today. Driving through the Lincolnshire Wolds today the fields draping the stunning landscape were of the lushest green and brightest rapeseed gold, and all of this set against an azure blue sky.........

Thoughts are with you

Mary 🌞

[Rachelthepotter in reply to mhos61]

Thanks for the good wishes, Mary. I feel a lot less stressed now that I’ve done what I can do to get the skin cancer taken care of. We’ll see how it goes. It’s made me feel very vulnerable, and I realise that it doesn't take much to tip me off balance.

[stillkicking]

Hi Rachel,

Thank you for posting the lovely photo of bluebells, they always remind me of my childhood and walks in the woods.

Very pleased that you have an improvement in energy and that adjusting the dose of medication has made a helpful difference. It certainly is a case of "one size not fitting all" with our pills and potions, and really grand that some fine tuning can bring rewards.

Sorry that you have the worry of skin cancer to contend with, but glad you are able to see someone about it soon and you will have more clarity about what is to be done then.

Lots of love to you from all of us down here in NZ. I have been potting a bit more lately myself, so very nice to hear that you are heading to your potter's wheel!

Peter x

[MPort]

Well done Rachel, you are a real trooper. It's great to see your positive attitude and how you get on with life and 'throwing'. Good luck on Monday and hope you get a manageable plan. Has the weight gain from Rux stabilised? Is it possible to reduce it while on it? I ask because I have an arthritic sister on it and weight is an insurmountable problem for her.

Very best wishes

Mairead

[Rachelthepotter in reply to MPort]

Thanks,Mairead. The weight gain isn’t fun, but it has stabilised, and I’m hoping that more activity in general will help. I can’t bring myself to even think of dieting - it wouldn’t work, and would make me miserable.

Rachel

[Nickthedevil]

Good luck on Monday, I hope they can sort it quickly.You have enough to contend with without that. Best wishes, Karen x

[beetle]

Hi Rachel. So glad that you are feeling better on lower dose of Ruxolitinib and higher Epo. I found that Epo made my spleen pain worse so have had to stick to the transfusions. I have just been for biopsies on my face in two places. I am just waiting for the results. They put enormous dressings over the biopsies because of my low platelets which made me self conscious to say the least! Fortunately they are off now so it is not so bad. I hope your appointment goes well and it is all ok. Let us know how you get on.

The bluebells are lovely and the sun has been shining to cheer us all up (as long as we keep covered up😊). Take care xx

[Rachelthepotter in reply to beetle]

Hi beetle

I’d actually rather have the odd transfusion, because they do,make me feel so much better, but the consultant is adamant that I have to have much lower hgb before I can have another. But the epo is helping ,and doesn’t seem to affect spleen.

Rachel

[beetle in reply to Rachelthepotter]

Hi Rachel. It’s interesting the different attitudes of different haematologists isn’t it. Mine feels that with a life limiting condition like MF with no cure suitable for me at present that his job is to keep me as comfortable as possible to maintain the best quality of life attainable. I don’t do very well when my Hgb drops below 100 (10 in old money!) so it is written in my notes to try and keep it above 100. This raises a few eyebrows I know but it does help me so I ignore them! I’m glad the epo is helping you. Do you self inject? Best wishes, Jan x

[Rachelthepotter in reply to beetle]

Yes, I self inject : no problems.

R

[tessa46]

Hi Rachel

Sounds like a bad patch for you but you are absolutely right to persist in exploring what is the the right amount of medication for you personally. Well done for that. I’m sorry to hear about the skin cancer, such a worry but good that you now have a plan. To quote Winston Churchill, just need to ‘keep b***ering on!’ I agree May in UK is a wonderful month, the greens are amazing. E hugs!

Tessa

[lizzziep]

Hope the skin cancer gets sorted quickly. We don't realise how strong the sun is here in the UK, I wasn't outside long, talking to my next door neighbour, but later in the day I noticed my skin was quite burnt - I'd forgotten the sun screen! And yes the bluebells are looking lovely at the moment.

Best wishes

Lizzie

[katiewalsh]

Dear Rachel, what a kick in the fanny. Just when things are getting better you have this probable face cancer. I’m really sorry & fingers crossed it’s easy to treat. Regarding how little it takes to tip our sense of well being. This is something that would upset everyone & you’re handling it really well. I believe you said you use mmj for bone pain. I’m on a maintenance dose of high quality high strength CBD oil prescribed by my neurologist. It has greatly improved my stress level & allowed me to handle adversity better, not 100% but much better. Something to consider. But all your other news is great & we’re all so happy for you!! Posting your photo was a gift to us all. So nice to see nature’s beauty. I hope your throwing went well. I found clay a total sensory experience of pleasure; & throwing,, when you have to eliminate all thoughts except the clay, is so cathartic. Please keep us posted about your cheek if you’re up to it. XXOO. Katie

[Rachelthepotter]

Thanks, Katie. I don’t use anything for bone pain, which I don’t have badly enough to need treating. Just enough to let me know its there.

I lived in Australia for 10 years, and that was enough to raise my risk of skin cancers. But also my awareness.

I’ll keep you guys in the loop - it definitely helps to feel an e team cheering for me.

R

[Jlah]

Hi Rachel. Thanks for the photo - beauty is timeless. Wish you all the best. Jacquie x

[Lab-Rat]

Hi Rachel, sorry to hear about your skin cancer. My haem did warn me about skin cancer when I started Jakavi. Two patients developed skin cancer during a small Jakavi trial my doc was involved with here in South Africa. Jakavi weight gain is real. I lost 12 kg when I was not on Jakavi, but gained 4 kg since on Jakavi. In spite of intermittent fasting and forfeiting my glass of red wine with supper the weight will not drop.

[Rachelthepotter in reply to Lab-Rat]

Thanks, Lab-Rat. I’d been warned about hydroxyurea increasing skin cancer risk, but not Jakafi. However, I’ve never liked strong sun anyway, and always find shade and use sun block. But maybe that’s not enough. I’ll ask my haem about it - and also the skin cancer specialist I’m seeing on Monday.

Is there any pblished data on the link between inc in skin cancer and Jakafi?

[Lab-Rat]

Please let us know what the haem and skin cancer specialist say. Yes, there’s published data: Google Jakavi (spelling in SA/commonwealth or Jakafi elsewhere) and skin cancer, see e.g. ncbi.nlm.nih.gov/pmc/articl... . My haem said small but significant risk. I’ve developed a tiny pin prick brown spot on finger, it is increasing in size, keeping an eye on it...

[Rachelthepotter in reply to Lab-Rat]

Thanks for the reference: I’ll pass it on to the skin cancer doc I’m seeing on Monday, and hope that she takes note. The final result in the article looked OK, but it was a nasty SCC.

[Fika500]

Lovely photograph Rachel! I’m sorry that you have the worry of a skin lesion on top of everything else and wish you all the best for your appointment on Monday. It is encouraging to hear that moderating your dose of Ruxolitinib has helped and increasing the frequency of the EPO is helping you too. It’s great to hear you’ve found a way of enjoying more outdoor exercise by using the electric bike.

Since my husband commenced weekly EPO injections , he has more energy/is less debilitated. His hgb has gone up from 94 to 103 over a couple of months. He takes 10mg of Ruxolitinib bd. His energy levels can vary and it seems it’s all about pacing oneself and managing the fatigue by adequate rest to ensure he has the energy to do something we’ve planned-also just ‘going with the flow’ by doing what we can when we can and accepting the times we can’t.

Wishing you all the best.

[Rachelthepotter in reply to Fika500]

So glad the epo is helping your husband. I too try to pace myself, but don’t always get it right.

This group understands, and that’s a great help in itself.

R