Besremi benefits?: hello community, I’ve... - MPN Voice

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Besremi benefits?

Laluna5683 profile image
11 Replies

hello community,

I’ve previously asked a question about Besremi vs Jakafi ( for my husband with PV, currently on hydroxyurea) and really appreciative the responses.

My new question is……

Since choosing Besremi and just recently receiving the shipment (haven’t started yet) - his most recent blood work has come to a range that we have been hoping for!

so here we are thinking……. If hydroxyurea is appearing to finally give the results we were looking for, what would be the benefit of moving on to Besremi.

I want to add , I know that the cost is an extreme difference but I’d like to take that out of the consideration.

Thanks for any input!

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Laluna5683
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11 Replies
KLCTJC profile image
KLCTJC

I think the biggest benefit is Besremi is the only type of drug to potentially cause remission. For me that is a big deal since I am 41 and hope to live to see my daughter grow. Now you can still live 30+ years alone with these diseases, but potentially reducing my risk of progression was why I wanted it. But lots of people are on HU forever too. Hope this helps. Hunter on here always has great more detailed reasons to try Besremi. Good luck! And congrats on good labs.

Laluna5683 profile image
Laluna5683 in reply toKLCTJC

Great info, thank you so much for your response. Best of luck as you are quite young!

PhysAssist profile image
PhysAssist in reply toKLCTJC

...and it is less likely to cause secondary cancers, and other chemo-toxic effects.

GardNerd profile image
GardNerd

Like KLCTJC said, a lot of those of us who are on Besremi (or Pegasys) go that route because of the potential for disease modification. I don’t believe that’s a possibility on hydroxy. Also, I believe being on hydroxy for a long period of time can lead to other cancers. The interferons have their own side effects, which hopefully can be worked through. But I don’t believe developing other types of cancer is among them. I suppose it has something to do with a person’s age and what medications are easier to tolerate. It seems to me that, if a person can tolerate the interferon, it’s a better way to go due to the possibility of slowing/stopping disease progression. Good luck with this big decision!

Laluna5683 profile image
Laluna5683 in reply toGardNerd

Possibility of stopping or slowing disease is a big reason to go for it. Thank you so much for your reply / experience / info.

PhysAssist profile image
PhysAssist in reply toGardNerd

In addition, the interferons have been long identified as generally safe enough for use in pregnancy for MPN treatment, so the safety for the rest of us should be a more or less given...

BUMP: best use of medicines in pregnancy

medicinesinpregnancy.org/Me....

Polycythemia vera in pregnancy represents a challenge for a multidisciplinary collaboration: A case report and literature review

ncbi.nlm.nih.gov/pmc/articl... use the 'find ' function to search "interferon".

Laluna5683 profile image
Laluna5683 in reply toPhysAssist

Is that so…… interesting. Thank you

PhysAssist profile image
PhysAssist in reply toLaluna5683

da nada 😀👍

hunter5582 profile image
hunter5582

There are several levels of an answer to your question. It all depends on what your husband's treatment goals, risk tolerance, and treatment preference are.

Hydroxyurea is an effective antiproliferative drug that offers the short-term benefit of effective cytoreduction and reduced risk of microvascular symptoms. Besremi also offers the short-term benefit of cytoreduction but can take longer to achieve the goal.

In terms of long-term goals, Besremi offers an improved chance of progression free survival. Besremi also offers an improved chance of a reduction in the JAK2 Variant Allele Frequency. Some may achieve a molecular remission. While the significance of this is still under investigation, many of us are convinced that having a lower level of the malignant clone is a good thing. The key question is whether this matters to your husband.

Hydroxyurea and Besremi each come with a risk profile. Each has a list of contraindications and cautions. The key question is which risks is your husband more willing to take to achieve his treatment goals. For myself, I could not tolerate hydroxyurea, experiencing toxicity even at low doses. Besremi has been much easier to tolerate, with side effects being minimal and manageable.

Hydroxyurea and Besremi work in two different ways. Hydroxyurea is an antimetabolite (cytotoxin) that interferes with DNA activity in hematopoietic stem cells and other cells in the body. Besremi is an immune modulating drug that work through the immune system to reduce proliferation. Besremi is able to more selectively target the mutated hematopoietic stem cells through a mechanism that is not fully understood. Would you husband prefer long-term chemotherapy or long-term immune therapy?

Based on my treatment goals, risk tolerance (and actual response), and treatment preferences, Besremi is a clearly superior choice for me. Besremi has been more effective and much easier to tolerate. I also prefer to use a an immune therapy rather than a cytotoxin. The prevention of progression is a critical goal for me. I believe that Besremi offers me a better chance to achieve this goal. Moreover, my quality of life has improved on Besremi. I feel better now than I did before I started on Besremi. In fact, I feel better now than I did 10 years ago. HU costs about $7/month vs $100/month for Besremi on my plan. It is well worth the extra cost.

If your husband just reached his treatment target, that would be an ideal time to switch to Besremi if switching is what he wants to do to achieve his treatment goals. Some who are not at their cytoreduction goal can take some time to achieve it. Since he will be starting at 50mcg (the recommended starting dose when switching from HU to BES), he will have time to see how his body reacts to the Besremi. Note that some of us prefer the low and slow approach to dose titration (increase doses gradually - keep dose at the lowest level needed for complete hematologic response). The dosing strategy would be something for him to discuss with the MPN Specialist.

The good news is that this is not an irrevocable decision. If your husband finds that Besremi is not suitable, he can try something else. We can only find out what works best by trying.

Wishing you both all the best.

Laluna5683 profile image
Laluna5683 in reply tohunter5582

Hunter, thank you so much for your reply. This is great info and i was already leaning towards the justifications that you mention. And reading about your quality of life improvement is great news. I read your post to my husband and he immediately decided to try Besremi. After all, we do have it on hand - and he can always make a different decision later, after seeing how he feels.

One thing we’ve noticed is that he has had significant hair loss on hydroxyurea (or we assume it’s the medication). Have you had any issues with hair loss on any of the PV drugs?

hunter5582 profile image
hunter5582 in reply toLaluna5683

Hair loss (alopecia) is a common HU adverse effect. I did not experience it due to the HU but did have some alopecia due to phlebotomy-induced iron deficiency.

Wishing you both all the best.

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