HU or Peg as 1st line

[Sprat19]

I have had ET MPL +ve for 11 years. Have been fairly resistant to starting treatment but after 2nd opinion yesterday conseeded . Have been offered either as 1st line. Any suggestions re pros and cons. I am age 61 and largely asymtomatic. Have slightly high cholesterol and a strong FH heart disease. Early heart attacks. Current platelets 668

[Wyebird]

Wow a difficult one. You are very lucky to be given the option.I wasn’t and was on hu for 6 years.

I don’t think I could have initially done Peg because it means injecting oneself. After seeing my platelets rise then meds then platelets then more meds etc I asked about Peg. I’ve been on it about 3 months. I love it.

For me being on hu was initially definitely the right med. you might only need a small dose.

Desperation gave me the ability to stab myself. ( it’s actually pretty painless.

Ask if you go onto hu can you change at a later date.

Good luck keep us posted.

[Sprat19 in reply to Wyebird]

Thanks. I get the idea there won’t be a massive problem swapping at a later date. I sought a second opinion . The first haematologist only offered HU and I felt rather railroaded. Sign this consent and off you go to pharmacy. I feel a bit apprehensive over taking a long term cytotoxic agent. I know many do. . I find I read one thing and go one way and the next and go the other

[AndyT]

Like you I held off starting treatment as long as I could. When the time came, due to rising counts and turning 60, I struggled to decide between Peg and HU but am very glad I opted for Peg.It brought my platelets down from 1100+ to about 300 within a few months, I’ve had no significant side effects and I now just inject 45mcg every four weeks as a maintenance dose.

[Sprat19 in reply to AndyT]

Thanks Andy. I saw your posts from when you started. I find myself leaning towards Peg but have concerns re whether it will affect my mood. Useful to know you are still on it and largely asymptomatic

[Meatloaf9 in reply to AndyT]

Hi Andy,I take HU for PV. Thinking about asking for Peg. What kind of effect did the Peg have on your Hct, Hgb, and WBC's even though you are taking it for ET?? Best to you going forward.

[AndyT in reply to Meatloaf9]

The only issue I’ve had is with my WBC which since starting Peg tends to run at the lower end of normal and has occasionally dropped below normal, though never so low as to be of real concern.Since I’ve moved on to a low maintenance dose every four weeks that’s not been an issue and we seem to have found a good balance that keeps all counts, including my platelets, in normal range…

[Meatloaf9 in reply to AndyT]

Thanks for your answer. Glad that the Peg is working well for you. I am going to ask to try it when I see a specialist next month. That will of course depend on the cost of Peg. I am in the US and will have to pay for it. I've heard it can cost as much as 5000- per mo.Good luck to you always.

[AndyT]

That’s a valid concern and I thought about it too as I’ve had a few episodes of anxiety and depression over the years before commencing Peg.A couple of years after starting I did have some mood issues again and took a 3 month holiday from Peg to see if that helped. Nothing changed so we concluded Peg wasn’t the culprit and I focused on dealing with other issues in my life. That seems to have worked and I’ve been back on Peg continuously since then with no further issues. 🤞

[Sprat19]

That’s really helpful

[Elleuno]

I was on HU for 18 months and stopped it in April due to horrible side effects. I’ve been offered Interferon as my platelets are up 1285. Frustrated my haematologist by delaying starting Interferon. Asked if I could have a consultation with a new MPN specialist who has recently joined the team at my hospital. I know I’m not the easiest person when it comes to medications, I have an apt. booked for early next month and will do more research but so far I think I’m leaning more to going for the Interferon, hoping that the side effects will be minimal to none. I’m 69.

[Sprat19 in reply to Elleuno]

Hope you get some sensible help

[Hopetohelp]

Have been on peg for 8months. Started on low dose of 45 which I think helps your body adjust slowly. Touch wood, tolerating it very well. It can be a slow acting drug for some but not others, according to what people say on here. I am now on 90mcg and awaiting first results on higher dose in a couple of weeks. Not feeling quite as tired so hoping they will be good. Peg has stabilised them and they have come down a bit but haemo wants figures lower. I like the idea there is a tiny hope peg can put you in remission and that dose can be reduced once figures come down. Good luck with whatever you choose

[Sprat19 in reply to Hopetohelp]

thanks. hpope to start slow if i go for Peg

[Sprat19 in reply to Hopetohelp]

the remission bit is also a reason I am swaying that way . I know its a tiny chance

[EPguy]

See my reply to your other post. As noted in this post, there are numerous ways to keep blood counts in good order. You can find differing opinions on the importance of PLT, while for example HCT is considered important for us by near all. But holding blood counts alone does not much affect progression based on what I have seen and in my case blood counts aren't helping quality of life.

Lowering allele is reasonably a desirable goal, although the evidence that lower allele is useful is not definite. In my opinion lower is better makes good sense and the evidence is pointing this way.

Any info you can find on INF, or other therapies, vs MPL ET will be of interest to others here with MPL.

[plum27]

I was initially on HU after diagnosis but had significant side effects, worst of which were significant arthritis in my hips and knees, thin delicate skin that was slow to heal from minor wounds and thin and increasingly deformed finger and toe nails. While my ET seemed effectively controlled, after two years of progressive deterioration of these side effects, with arthritis beginning to significantly affect my mobility and sleep, I switched to Peg. Interferon at the suggestion of my haematologist. The first few months I suffered flu-like symptoms, poor appetite and aching legs but these symptoms slowly reduced. Recovering from the side effects of the HU was slow but after about a year my nails had grown out and returned to near-normal, just a little thinner and weaker than before, but looking OK, my skin recovered its elasticity and healed from small cuts and abrasions normally, and the pain in my hips and knees was relieved: I could get in and out of the car, walk, sit and sleep without them bothering me, essentially back to normal. Peg Interferon seems to control my ET even better than the HU but my white cell counts are a bit low: low end of normal or just below. On the other hand, counts of abnormal cells in circulation are greatly reduced. After an initial period at 60 mcg / week, I reduced to 45 mcg / week and have been at this lower dose for some time. I am now more energetic and have better appetite and mood and have been able to return to some part-time work. Overall, a very good outcome and I would not go back to HU, despite having to pay for the Peg. Interferon myself. For me, it is a stark difference and easy choice, having experienced both. But you may react to either or both treatments differently than I have.

[Sprat19 in reply to plum27]

Thanks for sharing you experience.It’s really helpful. Of course I know I may respond differently

[Indigo42916]

Hello,

I am on interferon and it quickly has dropped my platelets to the normal range, no side effects. I tried HU for about 10 weeks, had leg swelling and "chemo brain". I am also ET-MPL, and interferon is potentially disease modifying, providing a type of remission, and potentially intervening on fibrosis.

As you may know with the MPL mutation, you are at a higher risk for transforming to myeleofibrosis. There is a lot of good research on its benefits for MPN's . I only inject now every 3 weeks, and counts are watched as it can lower your WBC's.

HU can't do that, and is associated with secondary cancers.

[Sprat19 in reply to Indigo42916]

Hi, It seems we are a rare group. Definitely erring towards Peg at the moment. Should be talking to the haematology nurse on Monday. Thanks for your input