Advice on precautions

[Marchhare7]

Hi everyone i hope you're all enjoying the weekend. Im looking for a bit of advice or experience please from those who have have MF/taking jakafi before covid. Im curious about the precautions you were advised to take and lifestyle changes. This is all really new to me i was only diagnosed in february. I have my list of questions for my next appt but really wanted to hear from you about your experiences, thank you

[JediReject]

Hi Marchhare, , Welcome to our Forum I'm sorry to read of your recent MF diagnosis it's all rather daunting to begin with but good you've started on a list of questions for your upcoming appt. Can I ask if you have Primary MF , do you have any symptoms like fatigue or an enlarged spleen. Also have you been told anything about how advanced it is if it is.

It's been a few years since I took Jakafi for my PMF (I started out on Hydroxycarbamide) I don't recall having to make any lifestyle changes because of it. Mind you I wasn't a very good role model when it came to do's and donts.

It's a good idea to keep hydrated and I would advise to watch out for weight gain as I piled the pounds on initially it can be a side effect. But overall it helped to alleviate most of my symptoms.

I know there are many on here currently taking it so hopefully they will advise.

Regards - Chris

[Marchhare7 in reply to JediReject]

Hi Chris, thank you for the great welcome. I have primary MF triple negative at intermediate 2 risk, watch for a SCT match not found one yet. I had all the symptoms night sweats, fatigue, problem was i was diagnosed with ITP for a year then IBS after a moan to my Dr we did BMB and we came to current MF. My spleen isnt too big think its about 11cm in not sure to be honest. Ive noticed weight gain but also a lot of bloating ive got a healthy eating advisor through work (NHS).

I do drink gallons of water, i feel dehydrated, like my whole body is drying out, ive felt like this for a long time (before MF/meds) im now on decaf drinks and no booze, i dont miss it anymore, miss my fizzy drinks though gave me tummy ache and wind haha and that's bad enough from the meds hehe

I have nosebleeds (had them for as long as i can remember) but facemasks are making them really severe, ive now bought a mask gard to under my mask and im waiting for ENT appt

Its alot to contend with, hope you're doing well

[JediReject in reply to Marchhare7]

Wow alot to contend with is understating your lot I would say. . I'm obviously no expert but it could be you've gone undiagnosed for some time to be at Inter 2 as MF can be a slowish burner though good news your spleen isn't too big just yet. The nosebleeds must be worrying for you and inconvenient I hope the guard helps and the cause identified soon.

I also hope a decent donor match is found for you thinking about the future but let's hope that's a ways off yet.

It sounds as though you're doing all the right things food a drink wise which is where I fell down badly being a lifelong beer drinker.

I take my hat off to you for sounding like you're not letting it all overwhelm you but taking a step at a time.

Good luck going forward - Chris

[Marchhare7 in reply to JediReject]

Hi Chris, i love a drink too but i could literally sniff the bottle and be drunk lol. I tell people i dont have the blood volume for the alcoholLouise

[Pte82 in reply to Marchhare7]

Marchhare7, vitamin C is needed for collagen synthesis. My wife's nose bleeds stopped with liposomal vitamin C. She uses it because it doesn't upset her system. It also stopped purpura and speeded up bruise healing.

[Marchhare7 in reply to Pte82]

Thanks, that's really interesting, ill look into itLouise

[Cja1956]

Sorry to hear about your newest diagnosis and about all the problems you’re having. I am post Et Mf, having been diagnosed with Et in 2008 and Mf intermediate 1 in 2019. In 2019, I had changed doctors and at the time I was taking Jakafi and anagrelide. She took me off those medications immediately because I had developed anemia and she felt the Jakafi may have been one of the causes. I now take Hydrea, Fedratinib, and baby aspirin. As far as the nutrition, I cut out almost all sweets and take a multivitamin and omega 3 every day (when I remember), I know I could probably do better with my vegetables and fruits. My doctor did tell me I should eat more protein to keep up my strength.

Sorry I can’t be of more help. Hope you find a donor soon.

Take care,

Cindy

[Marchhare7 in reply to Cja1956]

Hi Cindy, my counts were dropping anyway which prompted the BMB, on jakafi they only dropped a bit further but are stable. Back in clinic soon so hoping for better results

Oddly when i take supplements i start to feel really rough! Cant explain it but i feel better without

Take care

Louise

[Cja1956 in reply to Marchhare7]

Glad to hear that you have stabilized. That’s very interesting about the supplements.

[Otterfield]

Hi, welcome. My MF diagnosis is also recent, last summer, and I am on Jakavi. I was told to be very careful about infections and stay away from crowds. I was shielding during Covid and as restrictions lift, I understand that we still need to be cautious. That said, I had a telephone consultation with Prof Harrison last week and she said it was really just about common sense rather than having to be paranoid (which I was, a little!). For example, we will be fine if we just catch a cold. She advised me to use my instinct in backing off from anything that makes me feel uncomfortable, but otherwise to live normally.

Re diet, she advised a generally healthy diet, but treats are fine, as is enjoying a glass of wine.

[Marchhare7 in reply to Otterfield]

Hi, thank you for replying. Last year i had a few infections, colds which were awful but i wasn't diagnosed back then. Thinking back it did take me longer to recover but i did recover which is the point. Thank you its really helpful to put things in perspective and think outloud., my memory is terrible these daysTake care

Louise

[Wyebird]

A huge Welcome, plenty of help will come your way. Not from me though because I’m ET calr. Good luck

[beetle]

Welcome hear but sorry you have had to join us! You will get a lot of support from wonderful friends here. I have been on Jakafi for several years and fear it isn’t working too well for me now. Initially it caused a drop in red cells and platelets- my white cells have already been low for years of ET prior to MF. Before COVID I was already cautious about infections and my family were supportive in keeping away from me with colds etc. My two annoying effects from ruxolitinib are frequent urinary tract infections and weight gain although I do try to stick to Mediterranean diet with plenty of fruit and vegetables. Keeping well hydrated is also important. I hope you get your questions answered when you see your doctor. Best wishes. Jan

[Mazcd Partner MPNVoice]

hello Marchhare7 and welcome to our forum. I can see that you have had lots of advice from our lovely members, which I hope has helped you. It is very daunting when you are first diagnosed, but it has been particularly difficult for those like you, who have been diagnosed during the pandemic, with consultations taking place on the phone/online. We have a lot of very helpful information on our website mpnvoice.org.uk which will also help you. Best wishes, Maz