Besremi to the Rescue 🤞🏼

[DiveGoddess]

Went back to MOFFITT in Tampa to see Dr Komrokji. Moffitt pathologist reread BMB with fibrosis mild to moderate. (BMB from MD Anderson). My diagnosis ET. Jak2 and TeT2. Platelets still in 700k down from over 800. All other labs WNL. I am turning 58, aspirin daily. Still have lots of symptoms (brain fog, headaches, fatigue, joint pain, sometimes short of breath). So, he has put in to fight insurance for Besremi. Amazingly within 24 hours I had a phone call and email stating pre approval for one year given. He stated 20% on Besremi study for PV having molecular response where Jak2 is no longer detected. Possible Remission. Here is hoping! Any advice or positive energy is greatly appreciated.

[charl17]

I also see Dr. Komrakji at Moffitt and I am very happy with the results. I have MF with blood counts that are kept under control with Pegasys. I see him every 6 months. The medication is actually prescribed by a local hematologist with guidance from Dr. Komrakji. This has worked out well since I live 60 miles away from Moffitt. This might be an option for you to consider, depending on your situation. Locally I see Dr. Miguel Pelayo.

[DiveGoddess in reply to charl17]

charl17, thanks for sharing. It does take over an hour to get to the clinic. Curious how others get their medications, pharmacy said they could not mail Besremi. We are Clearwater, hopefully I will be able to make pickups with appointments. So surprised I was approved for this medication!

[EPguy]

That is surprising you have insurance approval with ET Dx since Besremi is not yet approved for that.

I have PV Dx with ET features. I'm on Besremi and looking fwd to that positive energy too.

Your Dr is likely referring to this report:

"At six years, 20.7% of patients in the ropeginterferon alfa-2b group (n=19) achieved a JAK2V617F allele burden of less than 1% compared to only one patient in the control group (1.4%; p=0.0001)."

ashpublications.org/ashclin...

The control group was on HU. Less than 1% is quite detectable with current tests, in fact they can go down to way less than 0.1%. So "no longer detected" is not entirely accurate using this report. But if your Dr has different info here we're all ears.

The best durable benefits do seem to be in the lucky ones that get the lowest levels, but there is still plenty of benefit for less dramatic reductions. Other threads have discussed the lower progression and complications for those on IFN.

I often post the plot here. It shows median reductions on Besremi vs HU. Most of us will be less or more than this, but many members starting from this level or higher are seeing results similar to this.

I see in your prior post you have 14% VAF at Dx. I'm the exact same (from blood). I have gone from 14-10% in 6 months on Bes. Less dramatic but lower starting levels can be harder to see big (or any) results as my Dr says. Look fwd to see your progress.

Ropeg 5 year

[DiveGoddess in reply to EPguy]

EPguy, I truly don’t know why I was approved. Hopefully, my approval doesn’t get pulled. Maybe because Bone Marrow mild to moderate fibrosis. Thank you for sharing graft. Best of Lick to you too!

[DiveGoddess in reply to DiveGoddess]

Luck

[EPguy in reply to DiveGoddess]

I expect you'll get to continue.

On the delivery method for Bes, it's normally sent overnight by courier to your home. It comes in a well insulated box. If your pharmacy cannot do that you should be able to get it from the specialty pharmacies that are authorized to fill this Rx. Two of these are Onco360 and Biologics by McKesson. Your pharmacy could be getting it from these companies as there should be no other way to get it.

But best to confirm you're ok to go this way before switching.

There is an option to edit the posts, it's well hidden in the gray "more" tab. I do it a lot.

[DiveGoddess in reply to EPguy]

thanks for the pharmacy info 😊

[hunter5582]

WOW! You must have really good insurance to have Besremi approved off-label for ET. Congratulation on the approval.

I would be one of those people with PV who has experienced a strong hematologic and molecular response to Besremi. My allele burden has dropped from 38% to 9% after 18 months on interferons (Pegasys, Besremi). Note that I only take 150mcg of Besremi.

I would say the main thing with Beremi is to give it time to accrue the benefits. This is a marathon rather than a sprint. We are all different in how we respond. for me, Besremi has been effective and much easier to tolerate than any other treatment option I have used.

Wishing you great success.

[DiveGoddess in reply to hunter5582]

Thank you Hunter! I appreciate all your posts and will keep you updated. Starting at 100mcg. BlueCrossBlueShield

[EPguy]

For the misery index, I have plenty of that too. Besremi won't necessarily improve it too much if your blood counts are already ok, based on the studies and my own experience. But the potential to reverse the disease makes it feel better anyway.

The Bes dose does go to once per moth after a year or so, I'm hoping that change will improve my symptoms.

[Anag]

my doctor fought the insurance for Besremi. I have ET no fibrosis and Hashimoto, but me heart was pounding for 5,5 years since starting Anagrelide. Also caused weakness. HU was causing me terrible neurological symptoms so couldn’t take that. Interferon was not given because of Hashimoto. But Besremi works diff than Pegasus and I’ve been fixing my body with diet, detox, etc for 5 yrs. am needing 1/3 thyroid hormone than before. Have fixed my gut, autoimmune problems and am rid of intolerances. Besremi now a solution. I’m also almost 58. 🙂

Started Besremi 7 weeks ago at 100mcg. Slowly reducing Anagrelide.

The first two times, no side effects. 🙂 was down from 4 Anagrelide to 2. Blood test. PLT up from 550 to 880! Besremi takes time to work. I continued.

Third time: sideffects headache, weakness, joint pain on the day after. Then ok. Reduced Anagrelid to 1 a day, then none.

Felt super: no pounding heart, BP that was driving me nuts the past 4 years down to 113/68, HR 60 after years of 80+ and recurring Tachycardia. Everyone blamed that on menopause. It was the Anagrelide! Period stopped 1,5 years ago. Came back last month and normal ran to gyne since 10% of women whose bleeding starts after the year point have cancer. Mine was a normal period! 😁

4th time was 5 days ago. No reaction other than a light head ache for a few hours. Blood test 3 days ago. 890! But Thyroid good. Increase Besremi to normal dose 125mcg next Monday. She said it takes time, restart Anagrelide 3/day to get plt down faster. Heart pounding, tinnitus, BP up. 🙄Will reduce to 2 tomorrow and then continue on 2 till next blood test. 26. Januar.

if you are really interested in knowing everything about Besremi, this is what I found that’s really good.

ema.europa.eu/en/documents/...

all the best!

[DiveGoddess]

Thank you for sharing this. Hoping your side effects simmer down coming off the anagrelide.

[charl17]

Regarding prescription delivery: I am on Medicare. Dr. Pelayo is associated with Florida Cancer Specialists. They have an "in-house pharmacy" called RXtoGo. They work with my drug plan and I get Pegasys in a refrigerated styrofoam box delivered by FedEx. Hope this helps. Moffitt may do something similar.

[Mtnlife]

Interesting. I have just been diagnosed with ET and mild to moderte fibrosis. I have CALR 1 as the sole mutation. I will be interested in how you do with this.