Milburn.

[Milburn]

Quick Summary:

Age 80.

Diagnosed with ET 12 years ago when had blood clot in toe. Platelets @ 1.5m

Put onto Hydro which worked well for some 10 years when I started with severe leg ulcers. Put then on anagrelide which did not work. Platelets levels ran up to 1.3m. Offered the P32 treatment which was amazing. Platelets levels dropped to 350 within 3 weeks and held for several months. Was advised at the time that I would need further treatment within 2 years.

Now due for that treatment ( platelets @ 888). But told P32 treatment no longer available. My consultant is advising me to go onto either Busulfan or Ruxolitinib

but concerned that either of these would reduce my immunity.

I have just recovered from Covid19 which put me into hospital for 8 days with severe pneumonia ( pretty much touch and go) but at least the feeling is that I have some immunity to Covid which I will lose if I use either of the two drugs.

When I suggested Interferon the Consultant said if I wanted that I could have it but I sensed he felt the likely side effects were likely to be severe. He did admit that Interferon was less likely to interfere with my immune system.

Left to me to decide which way to go. See the Consultant in 2 weeks when my platelets are likely to be around 1m and he is anxious to start treatment at that point latest.

Any thought?

[friendofpiglet]

Firstly, it's great to know that you have beaten off the dreaded Covid - that news may give us some hope that it is not as threatening to we MPN sufferers as we fear.

Your concerns regarding compromised immunity are probably well founded.

Have you considered going back onto HU? If the ulcers recur - and one would not expect that to be immediate - you could reconsider. Buys you some time, perhaps enough for the Covid threat to recede.

Andy

[Mwalimu]

You don't say where you are or if your circumstances make it relatively easy for you to isolate. I think both these factors would have a bearing on any decision for me. Not knowing either of those things I think that it would be easier to avoid the virus than the ill effects of any medicine which you would definitely be taken.

Anyway, good luck and will be thinking of you......

[hunter5582]

Sorry to hear that the P32 that was working is no longer available. What is us with that?

Busulfan is a third tier intervention for ET. Ruxolitinib would be off-label, but is being used for JAK2+ ET in many places. You are dead on target to want to avoid Hydroxyurea given your history with it. It is quite literally a poison for you. PEGylated interferon does make sense as an option. It is not a toxin and does not compromise you immune system. The only way to find out if you tolerate it and will achieve benefit is to try it. Many docs now prefer PEGint to HU due the improved risk/benefit profile.

I hope you can find a source for the P32 since that seemed to work for you. If not, your thoughts on PEGylated interferon certainly make sense. In your situation, it is what I would choose to do.

Do let us know how you get on. All the best to you.

[nspann1]

Hi Milburn, I’ve been on Rux (15mg twice daily) for years since I was taken off a drug trial due to brain swelling on one of the users. It was still on permission from the cancer trust at the time. I’ve had no real problems with it apart from poor circulation but that’s part of the illness not the drug. My spleen is checked regularly and my blood counts are all ok. Give it a try, if you don’t get on with it you can go for another option. Hope all goes well for you. Nick

[JaK2ET]

I hope things are going well following your appointment with the consultant ...