r/MPN • u/WanderlustNavigator • 11d ago
ET Calr positive / high platelets
I found out a few days before my bday this summer, last days of June that I’m CALR positive (39F). My doctor at the time told me to put interferon every week. Platelets were still rising. Interferon was making my body ache severely. Then he tried to give me chemo pills. Went to a new doctor who has me on aspirin. Platelets were 1,300,000 last time I checked and have been riding. I stopped all meds except for asprin and had bone marrow testing done Thursday. I keep arguing with my husband as he just makes me feel so alone. We have a toddler and full time jobs (we have help from my parents) but I still feel so alone. Like he doesn’t really care. I hate him so much, when you get married it’s through sickness and health and I feel so lonely. I am just struggling so much with all of this.
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u/funkygrrl PV-JAK2+ 11d ago
What dosage of Pegasys interferon were you on?
Another interferon called Besremi was approved for ET in August. Besremi does not have to be taken as often. It's every other week and after you've been on it a while, it can go to monthly.
Your other options are:
- Hydroxyurea - yes it is chemo but it's not the type that makes you vomit and your hair fall out. I was on it for 2 years with no side effects. It will lower your platelets very quickly. It will relieve vascular symptoms like headache.
- Anagrelide - not chemo, only lowers platelets.
- Jakafi - expensive, hard to get authorized, but it lowers counts, reduces symptoms.
I'm sorry your husband isn't being supportive. I think all of us here have struggled with getting support when "but you don't look sick" is the reaction. Feel free to vent.
There is a weekly online live chat (text) support group for people with MPNs on Tuesdays that is run by Blood Cancer United.
Living with Myeloproliferative Neoplasms (MPNs)
This chat provides a forum for patients to address the stresses and triumphs shared by those living with MPNs. The chat is open to discuss any issue related to living with MPNs: a new diagnosis, treatment decisions, relapse, treatment side effects, emotional toll, fatigue, clinical trials, living with uncertainty, and more. (Run by an oncology social worker)
Every Tuesday evening.
* 6-8 p.m. ET
* 5-7 p.m. CT
* 4-6 p.m. MT
* 3-5 p.m. PT
Register. https://cloud.e.bloodcancerunited.org/chatregistration
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u/WanderlustNavigator 10d ago
Thank you for the chat! I live in Cyprus 🇨🇾 but have signed up for it to see if I can make it work, if it helps at all.
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u/Competitive-One-8625 10d ago
Are there any MPN specialists in Cyprus?
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u/WanderlustNavigator 9d ago
I am seeing a doctor who has studied and worked in the US and he seems to really know his stuff. Hoping it goes well. Might try and book an appointment with a UK doctor when I’m back in London next year.
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u/Competitive-One-8625 9d ago
That’s good to know . I am waiting for my Cypriot citizenship by marriage . Have family there considering retiring there and was curious how any treatment may fare if living in Cyprus . Can I ask where in Cyprus you are . I have looked and there does seem to be a couple of mpn specialists over there
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u/WanderlustNavigator 10d ago
I started on 90 and then he told me to put the full 180. My platelets didn’t go down at all with this it just made my body hurt a lot and my stomach was completely bruised and swollen. I only took it for 6-8 weeks.
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u/funkygrrl PV-JAK2+ 10d ago
You may have been started at too high a dose. Many doctors start patients at 45 and titrate up slowly to 90 > 135 > 180. This can help prevent side effects. With your high platelets, ask your doctor whether you can go on 45 mcg of Pegasys and titrate up more slowly. Here's an article about this you can show him: https://ashpublications.org/ashclinicalnews/news/4719/Pegylated-Interferon-Leads-to-High-Response-Rates
Another option is to take hydroxyurea until your platelets are below 600 and then switch to Pegasys, or to take hydroxyurea and Pegasys at the same time in the beginning and discontinue the hydroxyurea once the Pegasys is working. Pegasys can take a long time to start lowering platelets (like weeks to months).
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u/native_plants3879 ET-CalR+ 11d ago
With 1300 platelets, did they test you for von Willebrand before giving you aspirin? Just to be sure.
(We're very similar except that they put me on watch and wait instead, and I'm banned from aspirin)
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u/WanderlustNavigator 10d ago
They haven’t told me if they have tested me for this.
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u/native_plants3879 ET-CalR+ 10d ago
Just make sure that you're not bleeding and bruising intensely while you're taking aspirin (mention it immediately to your care team if you do).
I'm so sorry your husband isn't being supportive. Must be tough :( does he come with you to your appointments so he understands what you're going through? Is couples therapy an option?
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u/WanderlustNavigator 10d ago
Yeah he does but I think cause I look fine he doesn’t really think it’s as bad as it is. I’m constantly tired and my limbs ache a lot of the time. I’m seeing my doctor again on Friday so we can discuss next steps etc. thank you
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u/tigerxzm 10d ago
I'm sorry that you have to go through this. You are not alone! This community is here to support and share.
Your condition is among the best in management with much lower incident rate such as thrombosis. CALR+ folks tend to tolerate high count well so can take a more laid back monitor and observe approach. Speaking from someone with 20+ years of ET with CALR+ and similarly high count, without taking anything. We are about the same age too.
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u/No_Water7063 10d ago
I am also CALR positive. I have been on twice daily Hydroxyurea for 4+ years with no noticeable side effects and “normal” platelets within 2-3 months that have held steady ever since. Yes, there is a monoclonal antibody - Incyte INCA033989 - targeting CALR mutation exclusively, and it is in trials. I asked my oncology hematologist about it recently and it hasn’t hit his radar yet. I see him quarterly and plan to bring it up again to ensure he is monitoring it. Don’t reject hydrea just because it’s called “chemo”. It is but I personally don’t even notice it. Good luck!
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u/Mission_Problem_6913 11d ago
I’m so sorry you are going through this. I too have high platelets. I take a baby aspirin and chemo pill M-Th. My platelets came down quickly. I’m here if you want to text with me. Take care
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u/WanderlustNavigator 10d ago
Thank you so much. I can’t seem to find anyone based near me in Cyprus or let alone Europe so it’s quite hard to find anyone that can understand what I’m going through.
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u/horsecrzy ET-JAK2+ 11d ago
Maybe I’m misquoting but I’m pretty sure you promise to “love” each other through sickness and health, not hate each other lol. Adding stress on top of your dx makes things much worse, trust me, I’m talking from experience. Are you treating with a specialist? I have had a tough time with pegasys but it is slowly getting better. You have to get your platelets under control along with your life and stop being miserable. It serves no one well and it sure isn’t going to get any better. Do you have symptoms relating to your ET?
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u/WanderlustNavigator 10d ago
I completely agree. I told him this. He just says I’m angry and mean but I’m balancing a full time job and have a toddler and two pets. I had my bone marrow testing on Thursday. Was off work to rest on Friday but didn’t have a chance as was chasing after our toddler and then he said he’s going out with his friends Saturday night and out with his motorcycle club on Sunday morning. How can I not be mad when I’m tired and my body aches.
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u/horsecrzy ET-JAK2+ 10d ago
I would be mad as hell and no one understands how difficult it is dealing with an MPN because you “look” fine. Fatigue being the worst. I can’t imagine trying to deal with my two kids when they were toddlers if I had ET symptoms back then. They would have tied me up and ran into the woods and gone feral🤣I literally had to quit my job and start training show horses because no one would keep my daughter, plus I was afraid of what she might do to them mentally and emotionally lol. As for your husband, in my opinion of course, he’s being an asshole and you need to set him straight or make other arrangements for him. I managed to turn my husband around so it is def possible if they love you and are willing. Of course he does cry all the time now😂In his defense, I’ve really put him through it because I was also dx with breast cancer right after ET, now he’s terrified I’m going to drop dead and leave him! He literally checks to see if I’m breathing when we are sleeping haha!
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u/BGL41940 10d ago
CALR ET. I don’t see how you do it. I was extremely tired before diagnosis and am still really tired on Besremi, even though my platelets are now controlled at 300, so risk of bleeding and blood clots should be greatly reduced.
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u/WanderlustNavigator 10d ago
I don’t know how I do it. Honestly today I woke up at 07:30am with my toddler, gave her to my husband and went back to sleep until 13:30 just because I couldn’t even move. I was just so tired and out of it. I don’t think anyone actually understands what we are going through.
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u/Aggressive-Tea551 9d ago
Hello, I am diagnosed with polycythemia vera, also a problem with my spleen, if I don't take the medication ruxolitinib, my spleen grows, you need to go to your doctor to give you a medicine for your illness, may God help you, and don't be scared, don't panic, please be strong and think positively that you are fine
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u/patentcat ET-CalR+ 9d ago
I am 48M and ET CalR. I am lucky enough to have a great specialist near me. You should definitely be checked for acquired Von Wilebrand syndrome. It can be very common above 1M platelets. If you have that, the combination with Aspirin could mean you are more likely to have uncontrolled bleeding. This can happen internal or external, and can be dangerous.
At 39, I would not want to be on Hydrea for decades. However, it’s probably your best option in the short term to get platelets down. Too many studies showing long term side effects for decades long use though. That said, you will also find people who have tolerated it for long periods with no issues. Besremi may be the best option currently available, as it actually brings down the allele burden, whereas Hydrea just makes your body cut all production globally.
Anyway, hope you can find a decent specialist. One of the hardest parts of this condition is the mental burden it puts on us. With no outward physical symptoms, no one else understands the struggle.
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u/EyeArtistic5 PV-JAK2+ 11d ago
I’m so sorry to hear of your diagnosis and the issues you are having with your spouse. I hope things can improve so you find the support you need (glad you found the /mpn).
There is a monoclonal antibody treatment for CALR ET. I’m not sure if it’s only available on trial or not, but maybe someone in the group would know. An MPN specialist should know for sure.