I saw a video by Jerry L Spivak, MD, Baltimore, Maryland. It is on You Tube. He is an MPN specialist there. He said that if someone takes HU, never to take anagrelide after it, or it would cause leukemia. I see some stories about people who have taken it after HU who have developed myelofibrosis, but have never heard of developing leukemia. (I don't want myelofibrosis either). Does anyone have thoughts about this? I am asking because I am taking HU. During my first year of treatment, I developed anemia. Dr. cut my HU back. My platelets are acceptable, but not down to his target range. He's ok with that. I worry that he might want to use anagrelide at some point, and I want to be ready to make a decision with info on this. I worry so much about this diagnosis and my health. Any input would be appreciated. Thank you.
Question about Anagrelide treatment: I saw a video... - MPN Voice
Question about Anagrelide treatment
I have checked this with the Medical Team who have said that: There is no evidence that anagrelide causes leukaemia.
In fact use after or indeed with HU is the commonest use of anagrelide in many countries.
Thank you so much Mazcd! I have worried so much about so much, and this takes this big worry of my mind. I appreciate this information!!
It is important to understand that MPN experts do not agree on all topics related to MPN treatment benefits/risks and that the understanding of MPNs is emerging. Dr. Spivak (my former MPN Specialist) holds views of MPN treatment that not all agree with, including NCCN guidelines and protocols used by many other MPN Specialists. He believes that HU increases risk of leukemic progression; however, many MPN Specialists disagree based on more recent studies. It is worth noting that Dr. Spivak does not state that the risk of HU-induced leukemic progression is a certainty, just that it is more likely.
Where there is a more consensus amongst MPN experts is that there is no linear relationship between platelet levels and risk of thrombosis. There is a relationship to higher platelet levels and risk of hemorrhage. Based on this, Dr. Spivak and others do not recommend cytoreduction for all patients with ET. He/they recommend cytoreduction when the patient's profile and actual symptoms support it. When Dr. Spivak recommends cytoreduction, he prefers one of the interferons. There are other MPN experts who concur, supporting the use of interferons as a first-line therapy.
Part of the reason that I have switched to the interferons is to reduce risk of progression to MF/AML. I am at increased risk for progression due to the presence of a non-driver mutation. While it is still emerging data, the current understanding is that the IFNs may increase progression=free survival. Moreover, the IFNs have been demonstrated to reduce JAK2 allele burden. The potential for disease modification is one of the reasons I prefer the IFNs over HU. Note, this is also a topic of current debate. Note that another reason I prefer IFNs to HU is that I have found them to be more effective and easier to tolerate.
Suggest that you review your treatment goals and treatment options. For most people with ET, there is no value to having PLT<450. Some MPN experts use 600 when a number is used for a cytoreduction target. Others do not use an absolute number at all, relying instead on the delta (degree of change). It is equally important to set quality of life goals and effectively manage all MPN symptoms and consider the adverse effects that the medications can cause. You should review all of your treatment options with your MPN care team, including HU, Pegasys, anagrelide, and possibly a clinical trial drug. It sounds like you are setting reduced risk of progression into MF/AML as a treatment priority. If you wish to make disease modification a basic treatment strategy, then make this clear with your care team.
Sorry for a rather long-winded answer but you actually are considering a fairly complex question. There is a lot to consider in making the decision about which treatment to select and how best to manage a MPN. For what it is worth, I would not rule out anagrelide based on a concern about progression to MF/AML. I would make that decision based on whether it will help me achieve my treatment goals and whether the benefits justify the risks. That is a complex question that requires review with a MPN-expert provider who know your case. It would be a good idea to get a second opinion from a MPN Specialist as well.
All the best.
Could you please confirm "=" is a typo? While it is still emerging data, the current understanding is that the IFNs may increase progression=free survival. IFN's may decrease progression. Increasing progression would likely decrease free survival. Thank you, hunter.
You are correct "increasing progression-free survival " = decreasing risk of progression. "Progression-free survival. The length of time during and after the treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse. In a clinical trial, measuring the progression-free survival is one way to see how well a new treatment works. Also called PFS. " cancer.gov/publications/dic...
Thank you so much Hunter for this excellent "long winded answer." It is a huge help to me to be able to talk about these ideas and get feedback, especially from you. I am going to be considering what you have said and work hard to be able to discuss this with my hematologist/oncologist when I go in November. Thank you again!!
That’s a strong statement by Dr Spivak.
I am so pleased that Maz has checked this out with the medical experts on your behalf and concluded that there is no evidence to support this statement.
We are so lucky to have this forum.
I agree, mhos61. Very lucky to have the forum, and the people on it!
I know Dr Spivak and he is a speaker at many of the conferences in the US , he also co hosts the doc to doc conference each Oct in NY with Dr Silver. He is well respected amongst expert haems. He can be a bit outspoken and will enthusiastically call out any doc he thinks is in the wrong in front of the hundreds of docs at the conference which can be entertaining. Not everyone agrees with his views and for sure he is not a fan of Hydroxy.
I havnt seen that video to hear EXACTLY he said so can’t comment on it. I think Hunter made some good points in his reply to you. Ie are the drugs you are on and concerned about the best for you, maybe they are but maybe not, I would put the energy in to exploring that if I was in your shoes. In the meantime try not to worry about a drug you are not taking, life is too short for that and hopefully we have better treatments not too far away.
Thank you ainslie, very encouraging.
Hi johnnyjumpups
I was taking HU for several years and then transferred to Anagrelide. I had to stop taking it after a few months because it caused my feet and ankles to swell up, but I've never heard of the connection with leukemia so I can't comment on that. I'm sorry I can't be more helpful!
Thank you, Sivasi, good to know about the drug, just for the future.
High platelet count? Anagrelide? Hydroxyurea?
hydroxycarbamide v Anagrelide
Hydroxyurea and Anagrelide
Anagrelide!
newly diagnosed with ET and on anagrelide
