Should I change to Busulfan?

[Cindy12]

Hi everyone!

I have been on hydroxy for just over five years now for pre-fibrotic myelofibrosis. When I saw my haematologist a couple of weeks ago she asked if I would like to switch to busulfan to see if I have fewer side effects. Is anyone else on this medication? She said it wasn't offered to younger people because it can affect the lungs. My next appointment is in December when I have to make a decision.

Thanks for any advice.

[Mazcd Partner MPNVoice]

Hi Cindy12, we have an information booklet about Busulfan which may answer many of your questions:

mpnvoice.org.uk/documents/t...

Best wishes, Maz

[Cindy12 in reply to Mazcd]

Thanks Maz. I will take a look at it.

[Tico in reply to Cindy12]

Hi cindy, I actually thought that Bulsulfan had been discontinued, I know it is one of the older chemo drugs, can't say if anyone here still takes it but I know people on here have taken it. Hope you get the information your looking for. Atb,tina🤗

[Cindy12 in reply to Tico]

Thanks for replying Tico. I thought I hadn't heard of anyone being on Busulfan. If it was discontinued, I wonder why. The haemo also suggested the possibility of having an injection instead, but she didn't give it a name.

[Tico]

Hi Cindy, I think they were referring to one of the Interferons.You will find all the information you need on the mpnvoice website on the different ones. Atb, tina.🤗

[fee13]

Read the article from Maz's link and read "busulfan and cancer", I think this is why it was discontinued.

[beetle]

I took busulphan for a while when I was younger and HU didn’t seem to be working for me. My GP at the time was horrified when he saw the potential side effects. The internet was in its infancy then and I didn’t have much information. When my Haematogist retired her replacement immediately took all patients off Busulphan and back on to HU. He then told me that busulphan was only appropriate in patients over 80 who had no other options. I have progressed from ET to MF and wonder if Busulphan had anything to do with that. However, others have pointed you in the direction of reliable information and I would say find out as much as you can before deciding what to do. Best wishes, Jan

[Cindy12 in reply to beetle]

I am over 80 so perhaps that is why she suggested it, but even so, I don't want to get another cancer! I am surprised that she offered it as she is quite a young haemo and must be up to date with all the latest research.

[mhos61]

Don’t feel under pressure Cindy. Make sure you know all your options. ‘You can have an injection’ isn’t the greatest explanation of a potential treatment.

Before your December appointment maybe you could get your GPs (Primary Care Physician’s) input. You’ve got sometime to do a bit of research. Try and arm yourself with as much knowledge as possible. Ask as many questions as you need answering here too.

Mary

[Cindy12 in reply to mhos61]

Yes, I will definitely do that. Thanks for the suggestion.

[Pkm52]

Hello Cindy12, I have JAK2 + Essential Thrombocythemia. I have been on HU for almost 3 years. My father developed Polycythemia Vera at age 60. He was treated with Busulfan after phlebotomy failed to keep his RBC's at the target. He was the kind of man that wouldn't have complained. I believe he responded because I don't think he took it for more than 18 - 24 months. I have developed the skin cancer (cSCC) HU has the potential to cause. This secondary cancer seems more worrisome than my primary one. At least there is the possibility of remission with Busulfan. Pegasys is "on sale" in the NW USA for $4,000.00 dollars/month. Yikes!

I am going to go with "what doesn't kill you makes you stronger " I have a phone message in to my Hematologist inquiring about making the switch. HU seems to have robbed me of my usual level of interest in doing things. The thought of cooking is not a positive. If someone cooks I happily eat it. I used to love fixing my prince charming yummy food. I may wait to start it after the Corona crisis. It would be hard to get the weekly labs drawn. Blood counts are checked more frequently at the beginning of Busulfan treatment. I believe it's use was discussed in a fairly recent publication. I will watch for your posts.

Best wishes

[Cindy12 in reply to Pkm52]

Thank you for your message. I decided not to go for Busalphan but opted for Pegasys, but after nine injections the injection sites became so inflamed and sore that I asked to go back on HU. Due to the coronavirus epidemic, I am still waiting for the prescription for this and have been without meds for 3 weeks. Hopefully, the pharmacy will delivered it today. I am in the UK and in lock-down , like so many others.