Hiya. I was diagnosed with ET in 2011 and am triple negative. Originally I started on HU but after leg ulcers was taken off this. I did not want annual BMBs that my heam requires with Anagralide so started on Interferon 3 yrs ago. I really want to come off INF if I can and the only thing I can seem to find in my research is Bulsulfan. Does anyone else have any experience of this regime, is it still prescribed? Any comments welcome before I see my heam next month
Thanks
Janet
ET, Dx 2011 57yrs old
Written by
eastwood1932
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Hi Janet - I don't think Busulfan is used much these days except as a last resort, due to possible long term side effects.
Do you mind me asking why you want to come off interferon? If that is due to side effects have you considered trying the slow release formulation such as Pegasys, which is generally much better tolerated.
Thanks for your reply. It is partly the side effects but also I still am not coping mentally with self injecting, daft of me I know but I still have to steel myself to do it and often have a little weep as I get the injection ready. Anyway will discuss it with my heam at the next appointment
Sorry to hear that. One of the advantages of Pegasys is that you need to inject much less often. Standard is once a week but I've managed to extend it to just once every 4 weeks.
I used Pegasys for ~10 months so had to deal with the 'self injection' side of things.
Initially a nurse came to my home to do the injections, after a while to make 'daily planning' easier I used a version that doesn't used a classic syringe+needle but has a system where you place 'a tube' on your leg that is armed and then triggers a very small injection - this I found almost painless.
Perhaps you could try one of these solutions.
Concerning injections in general, I also had to inject myself 3 times a day with anti-coagulants (stomach or legs) and found auto-hypnosis very useful to make things easier.
I think Busulphan is used much less these days due to its high toxicity and risks. I had it when I was first diagnosed, 29 years ago. We all have our bottom lines I guess, for me it was a relief when I no longer had to take 20 big 'horse pills' at a go!
If the injections are the difficulty for you, have you thought about trying to overcome that... hypnotherapy can be good I understand?
Well done for continuing to self inject despite your problems with it. Good luck with the future, Fee.
Hi Janet, I am on Pegasys interferon and I use EMLA cream (a topical anaesthetic) on the injection site, applied 30-40 min before the injection. It makes it 100% pain free and takes the dread away. I have been injecting for 20 months and my counts are now completely normal. I always use EMLA, you can buy it over the counter. Or ask to be put on the prescription when you get the interferon. Totally recommend it! It was the MacMillan nurse at my clinic that recommended it to me. Good luck!
Hi Susana, could i ask do you have any side effects from Pegasys. I inject once a week, tomorrow will be my sixth injection, but my last injection, i have felt awful aching all over as if i have cold/flu, i have been taking paracetamol to help which it does. Dont want to keep saying to people i feel awful, when they ask how i am. Seeing consultant 3 weeks time.
Hi Lin, sorry to hear you have been having bad side effects. Mine have fortunately been minor, it is very individual and also depends on the dose. What is your dose? I inject Friday very late at night, and go straight to sleep. I used to take paracetamol in the first few months to minimise side effects. And I took it easy the following day. I injected 90mcg/week for 10 months. I had minor flu symptoms in the first couple of weeks only and nothing after that. Your flu symptoms should disappear in time. Over time I did experience hair loss for a few months (which then subsided thankfully), cotton wool spots in one eye (which went away naturally), and a very sore mouth (which I manage with a steroid mouthwash). The last 10 months I have been on 45mcg/week only and have almost no side effects (apart from the sore mouth, which I am still treating). if your symptom burden is too high you could maybe ask to reduce the dose? I find 45mcg almost symptom free. Good luck!
His Susana, thank you for replying. I'm on 90mg, I inject Wednesday's in the evening and take paracetamol 2 hrs before. I also have a sore mouth. Hopefully it will improve.
Yes, I was on Busulphan after HU failed to bring down my platelets soon afterET diagnosis in 1994. I think it was the only alternative then and without access to the internet in those days I did not know about the side effects. I know my GP at the time told me that I really didn't want to know them! My haematologist retired and the next one immediately took everyone off Busulphan and back onto HU.
I have progressed to MF and I often wonder if Busulphan had anything to do with that. I have been told recently that it is only used in people over 80yrs and then only as a last resort.
I guess what I am trying to say is don't go on it voluntarily if you can possibly avoid it. There are much safer alternatives out there! Best wishes Jan
l was diagonised with ET three years ago and was put on HYdroxycarbamide. I had a bad reaction, so this was replaced with Anagrelide and this continued until early 2016.
My platelets were reaching 900, so the heamatologist considered a change was necessary. He considered that there was only one alternative, which was Bulsulfan.
We were told that Bulsulfan was a very old drug, over 50 year old and was not used very often and that there was only one other patient using it in our area.
I took Bulsulfan daily at first and my platelets were checked every two weeks. As my platelets reduced, the dose was reduced to alternative days and after three months I stopped taking it. There were minimal side effects.
I continued to have my platelets checked every two weeks and this was changed to three weeks after several months.
When my platelets increased to 350, I started taking Bulsulfan again but this was only for three weeks.
I have been off the drug now for over six months and have my platelets checked every three weeks and over the last year have taken it only for three weeks.
Thanks to everyone who has replied, it has been good to get so many opinions. I will have a good chat with my heam next month and see what he says. Thanks again
Hiya, yes I had a BMB as part of my diagnosis, the triple negative refers to my genetic markers, so not JAK2, MPL or CALR in my markers. My platelet levels were over the 1000 which was found when I was admitted to hospital with multiple clots and pulmonary embolism
Today 7th June and we went to the second hematologist appointment with tons of blood tests and complete CT scan completed between 3rd May first apppintment and today.
Today the result is that
1. Scan results are normal and no spleen issues or any other issues found in the complete body CT scan, breast abdomen pelvis etc etc all normal
2. All those mutation tests negative
(Jk2 neg, cmpl neg, cal r neg and many other all normal)
3. Surprising to find that my wife had slightly up platelets since 2008!!!!! We came to know only during our first apppintment 3rd May 2017.
4. In 2006 and 2007 her platelets were normal and in Jan 2008 her platelets went up to 470 and normal again
5. In 2014, her platelets were back to 350. She does get normal platelets and she never crossed above 500
6. A few weeks ago blood test showed platelets at 470.
7. She has iron deficiency but not anemic. Her count is 15.
8. She has type 2 diabetes since for the last 15 years. All other blood tests normal, red cells, white cells, hemoglobin etc
Hematologist recommends BMB to rule out all and she can discharge her to GP after BMP result
She also thinks that borderline Platelets is reactive to something and thats how her body is and no treatment required
She also ordered another strange blood test (NGS Myeloid gene panel)
I am no doctor but hopefully the BMB will rule out any MPN, and the raised platelet level is reactive. Even if it is ET please be reassured that this is not the worst news and most of us find it manageable for the vast majority of the time. Also you will find this group very supportive when neede and there is a direct buddy system run by mPNVoice. Hopefully things will settle down for your wife, fingers crossed
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