Essential Thrombocythemia treatment with Besremi

Posted by garyintlv @garyintlv, Jan 28 11:04am

At my last appointment with my haematologist 2 weeks ago, he gave me the choice of starting HU or Besremi injections every two weeks. After we discussed the pros/cons I decided to go with the Besremi but had to get approval from my health fund which I received today.

I am away overseas and will see my family doctor when I return to get referrals for ECG, blood tests etc..
I will have to go to the health fund clinic for the first 2 injections under supervision but after that I do it myself. It will be a bit of a pain travelling with the injections because they need to be kept 2-8°C (36-46°F). I am thinking of investing in this: https://4allfamily.com/products/portable-medical-fridge-usb-insulin-medicines (any better ideas welcomed).
https://pubmed.ncbi.nlm.nih.gov/38438627/
I will report back after I start the Besremi.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

diana56789 | @diana56789 | Jun 13 11:11am

In reply to @nohrt4me "When I was diagnosed with ET, I knew from my Dad's experience that meds would be..." + (show)

Hi, I've been taking anagrelide for over 10 years. We tried HU for about a month. I had every single side effect, with the exception of mouth sores thankfully. My platelets are in a good place; they go up and down as everybody else's. I also had some heart problems, a mitral valve replacement. I just make sure to keep my BP under control, Not sure this is helpful, but good to know others are in the same boat!

nohrt4me (Jean) | @nohrt4me | Jun 13 12:51pm

In reply to @diana56789 "Hi, I've been taking anagrelide for over 10 years. We tried HU for about a month...." + (show)

Glad the anagrelide worked for you heart-wise. Like I said, I went with my cardiologist's rec. So far, my mitral valve prolapse is moderate/severe, but it has been there x 10 years, so hoping it just keeps stuttering along as is without the need for surgery. I have it checked every six months and get a yearly ECG. I don't want open-heart procedure, but would go for the transcath deal. Over 70 now, so better odds that insurance would approve it.

I haven't had problems with the HU, but I would revisit anagrelide if I did.

lehall125 | @lehall125 | Jun 15 11:10am

In reply to @smyles73 "I’ve been taking Hydroxyurea for 3 years or more for very high platelets 800 to 990..." + (show)

I was diagnosed with ET and was referred to the Mayo Clinic in Arizona. After a bone marrow biopsy, chromosome test, and a full abdominal ultrasound, everything was normal except CALR positive, JAK2 negative, but continually elevated platelet counts. I learned my condition is NOT genetic, but rather a DNA mutation common as you age. I am now taking a low dose 500 mg hydroxyurea MWF. But it was reassuring to know everything else was normal. I continue to eat an anti-inflammatory diet and work out at my our local gym to try to stay as healthy as possible. Grateful for the otherwise good health.

cshew | @cshew | Jun 16 10:53am

Hi there, I was also looking into a cooler for the same reason. I am trying this one as it is a more affordable option: Nomad 1-3 Pens Insulin Cooler Red, TSA Approved Medical Cooler for TravelNomad 1-3 Pens Insulin Cooler Red, TSA Approved Medical Cooler for Travel
US $15.00. I look forward to hearing how your Besremi treatments go.

Lori, Volunteer Mentor | @loribmt | Jun 16 1:16pm

In reply to @lehall125 "I was diagnosed with ET and was referred to the Mayo Clinic in Arizona. After a..." + (show)

Hi @lehall125 Glad to read it was smooth sailing for you with the bone marrow biopsy and no other issues found with the results.
The biopsy experiences are unique to each person with most being pretty well tolerated. But I don’t think anyone has them as #1 on their list of fun things to do! ☺️

Were you having symptoms which led to your discovery of having ET?

lehall125 | @lehall125 | Jun 16 2:15pm

In reply to @loribmt "Hi @lehall125 Glad to read it was smooth sailing for you with the bone marrow biopsy..." + (show)

No, not a single symptom. My high platelet count was discovered on the blood draw on my yearly exam for Medicare. My hemotogist said because I am so proactive about my diet and exercise that is probably why I did not exhibit any typical symptoms.

garyintlv | @garyintlv | Jun 17 4:42am

In reply to @cshew "Hi there, I was also looking into a cooler for the same reason. I am trying..." + (show)

I went for the 4AllFamily cooler because I have found that often, even though there may be a fridge/cooler in a hotel room, often they do not work or just don't cool enough.

I had a blood test yesterday which showed my platelets are now in normal range.
I am seeing the hematologist in a few weeks. I am hoping there won't be a need to increase the dose.

cariadk | @cariadk | Jun 17 11:09am

In reply to @garyintlv "I went for the 4AllFamily cooler because I have found that often, even though there may..." + (show)

Wonderful! So how long did it take to to get to normal range?

garyintlv | @garyintlv | Jun 17 3:14pm

In reply to @cariadk "Wonderful! So how long did it take to to get to normal range?" + (show)

I have had one injection every two weeks for 16 weeks.

eferret | @eferret | Jun 18 10:20am

The support people at Onco360 pharmacy told me that Besremi can withstand temperatures of up to 77°. There have been times that it arrived at my home barely colder than room temperature and it was ok. If I were traveling with Besremi for just a few hours I would put it in a ziplock bag with a couple of cold packs right out of the freezer. What kind of documentation do you need for traveling with Besremi on a plane?

View More View Less

Please sign in or register to post a reply.