Low Dose Thalidomide

[47Robert]

My haemo has floated the idea of low dose thalidomide in combination with prednisone as a potential treatment for my advanced myelofibrosis. I have read a couple of articles on the net which suggest quite a good response in reducing anemia and increasing platelets.

Has anyone had experience with this combination of drugs?

[Stevesmum42]

Sorry Robert. I haven’t heard of that combination .

I hope someone can help who has experience or knowledge of that therapy.

Regards Sandy,

[ccsial]

I found this trial

bloodjournal.org/content/10...

[champ30]

Hi Robert,I am taking lenalidomide,which is a thalidomide drug.I take 5mg on alternate days.I was diagnosed with high risk MF and could not tolerate jakavi.

However this is not with pregnisalone.

I don't know if this is helpful.

Regards Lynn.

[47Robert in reply to champ30]

Hi Lynn

Thanks for your reply. There doesn't seem to be a lot of conversation about this drug although it seems to offer some pretty good results.

Regards

Bob

[Joprv]

Hi Robert, ive just come off that treatment after 2 months. The 2 drugs work together, that is the only way it can be prescribed to get the funding to cover the cost approved. Ive chosen to come of it as I feel that it did not work well with all of my other treatments. I have always believed in giving everything a shot so go for it Robert, it may work well for you. Let me know if you would like any more specific information. Be well, Jo

[47Robert in reply to Joprv]

Thanks Jo. Were you prescribed the drug combination under the Pharmaceutical Benefits Scheme?

Regards

Bob Connors

[Joprv]

Hi Robert, hope you are feeling well.

I am in Australia and the medical world is very different here. My Oncologist had to write to the company and advise of all my results/symptoms and request approval based on that. I was then advised that I would have to pay for the first 3 months ($ 1,560 per month) and monitor all changes etc.. if there was a positive result they would provide all ongoing drugs at no cost, as long as my Oncolgist continued to report.

After 2 months I had little change, they did not agree with all of my other treatments, including my Jakafi and blood thinners so I stopped.

I have advanced MF with organ complications due to my spleen being 36cm in size.

I am now transfusion dependent on both platelets and or blood, these are weekly.

There is nothing else out there at present for my current status. We remain in hope and believe our good Doctors will continue to fight for us.

All the best to you on your health quest, happy to share more if it will assist.

Bye for now from down under, in gratitude always, Jo

[47Robert in reply to Joprv]

Hi Jo. I too am in Australia (Tweed Heads area). My haemo did mention a similar scenario to that which you described with the drug company, so , he is going to discuss my details with them.

He is also going to submit my details to Peter MacCallum clinic in Melbourne to see if they have anything to offer.

Currently I am having weekly blood transfusions, but so far my platelets are holding up around the 40 mark and my spleen is not overly enlarged.Presumably Jakavi 5mg twice a day is holding it at bay. I feel remarkably well most of the time but the mental aspect of sweating on blood tests and worrying about potential treatment is draining.

Thanks for sharing.

Regards

Bob