Post ET MF Update

[moongazer100]

Hi,

I posted earlier in the year on behalf of my Dad (77) who has post ET MF. Dad has been taking HU for several years & it has been fairly good at keeping his platelet count at a reasonable level, however we were concerned that it was maybe causing some side effects.

Thanks to the great advice I was given on here, I arranged for him to be seen at Guys in April. We had hoped to see Prof Harrison, but it was a member of her team, and unfortunately the appointment didn't go quite as we had hoped! This was mainly due to the fact that when Dad's blood test came through his platelets were up to 1800. Therefore the Dr's main concern was getting this under control. Our main aim of the appointment had been to discuss other treatment options as our local Haematologist seems reluctant to change Dad's treatment. The Dr at Guys did say that once things were more stable they might consider Interferon. However, whenever we attempt to bring this up with the local Haematology Team they say it is not tolerated well in elderly patients and seem reluctant to discuss further.

Since April, Dad has being having twice weekly blood tests and his HU dosage constantly adjusted to try and get his platelet count more stable. It is currently about 800.

We have a follow up telephone appointment with Guys next week, where we are going to try and bring up the Interferon again. I was just wondering if anyone on here of a similar age had changed from HU to IF & if so what there experience had been?

Many thanks in advance for any advice.

[hunter5582]

Age affects the ability to tolerate many medications, including Pegasys and hydroxycarbamide. Since your father is already having side effects with hydroxycarbamide, it would be very reasonable to consider a change to Pegasys. Pegasys is well recognized as a first-line treatment option for ET. We are all different in how we respond to the medications used to treat MPNs regardless of age. I am in my late 60s and definitely tolerate and respond better to the to interferons than hydroxycarbamide.

Given that your father's platelets are so high and that hydroxycarbamide is faster acting than Pegasys, staying on a while longer to achieve a hematologic target would make sense. He is at significant risk for hemorrhage with platelets that high. While he needs to be on aspirin or another antiplatelet medication, aspirin has increased risk of hemorrhage in people age > 60. This is all the more reason to get the thrombocytosis under better control.

Suggest being clear about what the hematologic target is and when a change to Pegasys would make sense. I would expect that the care team has also checked his von Willebrand factors and prothrombin times since these are also relevant factors. Once he is at the appropriate target(s), he can make the switch.

You may encounter resistance in some systems to switching to Pegasys since it is so much more expensive. There is also a reported shortage of Pegasys in some places currently. It may be necessary to assertively advocate for his preferred treatment when the time is right.

Wishing you both all the best.

[moongazer100 in reply to hunter5582]

Thank you for the helpful advice.

[Mishie14]

I have ET JAK2+ following diagnosis 2 and half years ago at age 72. I did not tolerate first drugs HU nor anagrelide at all though after short stints both resulted in platelets moving down. Third drug is peginterferon injections which have provided relief from debilitating side effects though it has been intentionally slow going and low dose. In June the dose was upped to 90 mcg weekly and platelets moved a bit faster to 690/700k. My goal is get to low 600’s. At the start of peginterferon I got two skin inflammations on shin. They were a side effect and no recurrence. The first couple shots at 45 mcg also triggered a short period of headache and nausea the day after. I took a 385 Tylenol and had anti nausea prescription pills as well that doctor said to keep close. It worked quickly. What hasn’t changed—fatigue, occasional bone and joint pain and sense of taste. I found peginterferon to be the best solution for me. It has taken time to get platelets down but it has been worth it. I hope by end of year to be in maintenance mode. Peginterferon is much more expensive than HU and anagrelide but insurance makes it affordable. I hope your father’s doctor gets open minded to more options for his treatment. Best of luck.

[moongazer100]

Thank you for commenting. I do think the cost could definitely be a reason as to why they are reluctant to change his treatment.

[lizzziep in reply to moongazer100]

I’m post ET MF, age 71, I was put on peg and felt great on it but my counts dropped too much, I still think having a covid jab contributed to that! I’ve been on Rux since November but I’m still very anaemic. I had a phone appointment the other day with Guys and they have recommended Momelitinib. My local haematologist was reluctant to change medication and, like you, I think cost is a factor in that. Guys are contacting my doctor and hopefully he will prescribe it. Definitely ask Guys about changes to medication. I had blood tests before the phone appointment and the results were emailed to them so they could see my current situation. Hope all goes well.

[Peterwi]

I started Pegasys at 75. My only problem was a bit of headache the following day, and my platelet numbers went slowly down. I think it is worth trying. I was told that I could always go back to HU.

[ainslie]

it’s impossible to predict if someone will have sides from Peg etc, some can have initial sides but that can settle or get worse. My personal view is Peg generally is a bit harder to tolerate for most. But , if there is nothing to lose why not try it, he can always go back to Hydroxy if necessary , Peg would be my drug of choice if I could tolerate it, I can’t so I am on Rux for PV

There is maybe an element of some clinics not wanting to rock the boat or try the unknown/ let sleeping dogs lie. Etc Unless they have some clear medical reason why you shouldn’t try it then you could persist until your satisfied. Guys are usually excellent especially if you can see Clair Harrison.

We don’t know much about you fathers med history so dangerous to generalise but some with MF find PegBes etc can slow the progression or even reverse it a bit, it’s a subset for sure but it’s in the literature, I personally know one patient diag post PV MF in 20000 heading for a transplant, instead went on the old version of Interferon and is still on it with stable disease, it’s important to emphasise that’s a exceptional result but it’s a true story.

[Exeter21]

I am 70 & use interferon as HU was horrendous for me & I refused to continue on it . I struggled to get Interferon approved locally & too went to Guys . It is totally down to NHS & cost. HU cheap Interferon expensive. Keep pushing . Julia 👌