Options for treatment

[Joankalus]

I have ET and have been on 500mg of hydroxyuria/day. There are days where Im exhausted and my body aches. I would like to explore other treatment options.

[Marie_14]

Joan my husband was on hydroxyuria and was very tired. He never mentioned aches but he never complained so I had to guess what was going on!

We were attending the local hospital and I wasn't very happy about the way he was treated so we asked for a second opinion at a Centre of Excellence. He was taken off Hydroxyuria and put onto Jakavi. He was much better on that. He died this year but from another condition. He had Myelofibrosis and they now use that drug on most patients.

I noticed that ET can turn into MF so it might be a good idea to get that second opinion? Look for your nearest Centre of Excellence and ask to be referred there.

Marie x

[linbatten in reply to Marie_14]

I would agree. I had PV which turned into MF. I used Jakafy until I received a stem cell transplant. It has been a year since my transplant and everything seems to be doing well. If you are close enough check out City Of Hope in Duarte, Ca.

[DScully]

I also take 500mg’s of Hydrea for ET. Fatigue and bone aches are a bit of an annoyance for me at times. However, there are other reasons for bone aches. Arthritis, age, too much exercise, lack of exercise and weather changes may also cause the pains. I work through the fatigue on those days it hits me harder. We all respond differently! I cannot afford Jakafi, so am stuck with HU(hydrea).

[Marie_14 in reply to DScully]

Do you live in the US? If you live in the UK and meet certain criteria you will Jakavi/Jakafi free.

Marie

[DScully in reply to Marie_14]

I live in th US. Will stay on HU as long as it keeps me stable.

[cwadams]

The other options include anagrylide or/and alpha interferon (or pegylated interferon). You might inquire with your physician about these options. They may be more expensive. I was on anagrylide and interferon for about 20 years -- now in the myelofibrosis phase on ruxolitinib but I held up well on anagrylide and interferon.

The literature does seem to suggest the hydroxyurea is a very good choice -- but -- there are other options.

Best,

Craig

[Marie_14 in reply to cwadams]

Craig

Good luck to you. It was so good that my husband was put onto this. Same as Jakavi or if in US Jakafi! Think I am right about that? Nobody should be denied it because of cost. What kind of world do we live in?

Marie

[DScully]

Hydrea is keeping my ET stable, don’t have to see my oncologist for 4 months.