I am new to this forum.
I was diagnosed with ET in 2010 and have been on a daily dose of 75mg aspirin since then. My platelets at first were 542 and over the past 11 years have fluctuated but remained around mid 600s.( Once they were 699 )
My previous consultant said that I would not require further medication unless the platelet level rose to 1300.
However I had a change of consultant in 2019 and he has been asking me to start on hydroxycarbamide but having read the side effects I have delayed. I feel well and worry about taking this medication as I think about the advice of my previous consultant.
At my last consultation I heard about Interferon injections.
I wonder has anyone had experience of these injections. I’m aware that they have side effects as well though may not be the same for all individuals.
I realise that the final decision is mine but because the platelets have remained fairly stable for so long I am very reluctant to start the medication.
Hi, I am in the same position as you and similarly, I have found the list of possible side effects quite mind numbing!
Again like you, I fell really well and my consultant has not exactly given up asking me about hydroxycarbamide and Interferon but she just says, I guess you don’t want to start any other treatment and so far my reply has been - correct
I have not been given an upper limit for my platelets but they seem to wander around 575 - 650 and as I feel well, I’m not ready to consider other meds.
In the end it is all down to your own personal choice and evaluation of the side effects of the drugs versus the illness itself. Don’t be rushed into anything until it feels right.
A great big welcome @Rose I am so pleaded that you have found us.
I cannot help you with your question but I hope others will be able to do so.
It is so confusing and worrying when 2 ‘experts’ have differing opinions.
Have you asked the 2nd consultant why he is suggesting something your previous consultant wasn’t?
However because all our tests, medical history and family history are taken into account perhaps that might be why.
I bet you can do without this stress as well.
If you would like to talk to someone to talk to someone the Blood Cancer Support Line details are above.
We are here to support each other so please let us know how you get on. Look after yourself.
Thank you so much for your comment.
It really does help to know that there is someone in the same position as myself…very reassuring that I am not the only one!
Apart from the fact that I generally do feel well I am confused that my previous consultant mentioned the number 1300 as the level of platelets when he would advise treatment.
Since I started with this present consultant at the end of 2019 he has continued to ask me at each consultation( every 3 months) if I am going to start hydroxycarbamide.I have kept saying " not yet!!"
It must be really difficult when you feel under pressure to start treatment
Hello Rose - I feel for you with decisions to be made. I am an ET patient diagnosed 15 years in my mid 40s, my particular situation needed treatment straight away so have had 13 years Hydroxy and now 3 years on Pegasys interferon.
My few suggestions would be- make sure the haematologist you are seeing is MPN specialised, experience in MPNs is essential in a consultant and many are not, check if you can - depending where you live and what’s local enough you can get a referral elsewhere or have a one off consult with someone like Claire Harrison at Guys and St Thomas - but that’s London depends again how far that would be - as if someone very experienced gives treatment suggestions you can go with that and that person can advise your local consultant for ongoing.
Do use MPN Voice it’s website, it’s forum is on Health Unlocked, they also run patient forums currently online excellent and very supportive to meet up with other similar to you and lots of practical talks by professionals
Remember with treatments - the paperwork printed for any of them will tell every possible side effect, they are written in detail from a legal point of view cover every possible even if unlikely scenario as they are obligated to do so. To the person about to take of course they can scare you!
It’s a funny thing with MPNs as no size fits all as to treatment, the dosage and the side effects of treatment. Some only need a couple of Hydroxy capsules a week to keep their platelets in normal levels which can be handy to know. I see your platelet counts are not extremely high but are consistently well over “normal” which some say is 400 others 450 () May be why your newer consultant now suggests treatment.
My experience with Hydroxy was good, I was always on very high doses too, yes initially side effects but workable and you get to know ways round things - the fact I was on it 13 years probably answers that it is ok long term. I had to change to interferon as unusually Hydroxy was no longer working for me - I have had low dose Pegasys that I inject weekly, it does impact me quite a lot but I know many many patients take it with no effect whatsoever and it is highly successful in controlling platelet levels and ET itself. It really is such an individual response to either of the meds with a range of effects from nothing to something that you almost have to ponder on what feels ok for you and give it a go to see how you respond - once you can feel you can trust the advice of who is guiding you of course.
The only other thing I would say about treatment that I mention those contemplating having to start - is that treatments are in fact our “friends” even when they don’t quite feel like it maybe, as they are there to protect from the bigger problem that can come from the disease itself and you will know the issues that come with ET when the platelets are too high - protection is definitely a friend (I am having to apply my own counsel all this week after third prime dose vaccine, been rough all week thinking I am not having any more of those!! )
Do let us know how you get on
Many thanks for your very detailed response. I really appreciate you taking the time to explain your experience. It has helped me to know that you have had both these treatments and been able to cope.
My previous consultant gave me information from MPN Voice.
I suppose I am just hesitant about starting further medication and I know that ultimately it will be my own decision.
It is encouraging to know that you have been able to manage ET for such a long time.
You sound as if you have a very positive outlook and I think that is good to have…being thankful for each day even though sometimes we don’t feel on top of the world!!
I have a few weeks to think this over as I don’t see my consultant until at least November.
Many thanks again…very much appreciated.
I’ve been taking small doses of interferon Pegasys
And though I was nervous and anxious injecting myself… I’m not feeling any difference… I take the injection at night and found this reduces feeling anything different.
The needle is really small and you can put in either your abdomen or thigh but was recommended ab.
So far and touchwood I’ve been absolutely fine alhough I do get itchy when my next bout is due.
I’ve not tried hydroxycarbamide to compare.
Thank you for that information about Interferon injections. It is really helpful to hear from someone who has experience of these. I feel that I am now better informed, though still undecided about my decision when I see my consultant in a few weeks.
Many thanks again.
The only difference I’ve felt is sometimes I get itchy around my belly where I’ve injected myself.
My main concern was my hair falling out and fair to say (touchwood) I’ve been fine. Don’t be alarmed initially about reading the side effects… I know everyone is different but if they start you on a small dose it should limit the chances of any side effects and because you inject yourself you can take it as slow as you want… It definitely hurts less than the sharp scratch of a blood test and the needle is like an inch long and super thin.
I’ll be honest I can’t remember being given a choice but did get sent material through the post few months before going on interferon.
It’s proper controlled my hct values and I’ve not needed a venesection since being on it… even when my levels have been 0.002 away from triggering one.
Definitely consult with your medical team, and be confident to do what’s best for you.
Yes my main concern is exactly the same as yours!!
I know the worst case scenarios are always mentioned in any list of side effects but hopefully if I decide to agree to the injections they will start me on a small enough dose. My platelets are not extremely high even after 11 years.
Thanks again…much appreciated.
My family don’t know about my condition so the fear of my hair falling out would’ve put me in a difficult position. Thankfully secret is still safe with me.
If you do move onto treatment, if it’s injections… you’ll take the first one at hospital infront of a nurse who will show you everything and answer any questions. Which was really helpful as I’ve never done anything like that before and was really anxious about doing it wrong. It is very similar to a finger prick test but not as sharp, sudden or painful despite a slightly bigger needle.
Given the choice I actually prefer doing it myself.
Yeah I had in my mind that infereron would be like chemo reading all the possible side effects but to honest, whether I’m just lucky or its normal… it’s not hindered me in anyway.
I was diagnosed with ET about 18 months ago and was put on aspirin before being told to stop. Following a bone marrow biopsy a year ago, I had a free ‘upgrade’ in diagnoses to myelofibrosis. At that point, I began 45micrograms of interferon weekly with good results in platelet reduction for the first couple of months before plateauing which required an increase to 65micrograms weekly which I’ve been on since.
For the first few weeks, I had some flu like symptoms following the injection and was left feeling very fatigued, but that was the worst of the side-effects for me and I was able to persevere with it. Very quickly, I was neither up nor down on injection and no more fatigued than before I started treatment, the only change I made was to my injection day. Still find it a bit odd injecting myself every week and occasionally get a little stinging/ itchiness at the injection site, but nothing to write home about. The increase in dose after a few months didn’t seem to exacerbate side effects at all.
I would say it was worth persevering with as my platelets were nearing the top end of the ‘normal’ range at my last set of bloods, but not quite there. I’ve a telemed appointment with my haematologist next week and will get the results of the latest bloods then and hopeful I might be in the ‘normal’ range this time.
Thanks so much …that has helped to reassure me.
It is so much more helpful to hear from people who have actually had experience of taking the injections.
Hope your results are encouraging for you next week.
Yes I know about Interferon as I have to inject myself with it once a week in the stomach.There are 3 kinds of Interferons; Alpha (the one I take),Beta and Gamma.I believe that Interferon Beta isn’t used much for cancers and it’s mainly Alpha and less often Gamma but I have only used Alpha.As the name suggests it’s ment to interfere with the cancer cells.The lymphoma that I have, Mycosis Fungoides, didn’t respond to any chemical methods only radiation so they used the Interferon Alpha and I think that it has worked a bit on certain parts of the body like shrinking plaques to patches but in general the Mycosis Fungoides is reinfiltrating after the radiation treatments stopped it for about 7 months.They are keeping me on it until December to see what happens.I haven’t noticed any adverse effects from the Interferon Alpha.It is mainly used to treat ailments like Hepatitis but they discovered that it works on certain cancers like melanoma and some Cutaneous T Cell Lymphomas and so other things too.You will have to have a blood test about once a month if you are on Interferons.
Thanks for that information Kevan.
Just today I received an appointment for my next consultation at the end of the month. I notice that I will now be seeing a different haematologist so it will be interesting to hear what he suggests!
I have only really researched Interferon Alpha and it’s use against Mycosis Fungoides and other related Cutaneous T Cell Lymphomas and from my reading it has about a 30 percent response rate but a lot of these will, like me, be partial responses but something is better than nothing I suppose!It isn’t used against the faster Cutaneous T Cell Lymphomas like PCTL NOS or Transformed Mycosis Fungoides (when the MF cells become large) and they go straight to stronger things.I know that it is used to treat melanomas too but I don’t know about other cancers.
I will have some more questions to ask at my next consultation!
Interferon had only been mentioned for the first time at my last consultation ( 3 months ago).
Before this I had been told about hydroxycarbamide but was hesitant because I was concerned about the possible side effects.
However as we are all different I realise that not everyone will react in the same way to treatment.
Anyhow it’s been very helpful for me to have had input from others. Thank you
Hi @Rose I always like to see another consultant as to me it is like a second opinion.
@Rammie and @Kevan7 and @CosmicHobo and @Jilly20 and @Quercus have been very useful.
Please let us know how you get on.
Look after yourself
Thank you…consultation is at the end of the month so will let you know how it goes.