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Anyone diagnosed with Essential Thrombocythemia (ET) with CALR?

Posted by gaildj @gaildj, Apr 15 9:13am

I felt confused and freaked out after the diagnosis. It seemed no one knew much about ET. I didn't know that hydroxyurea was chemo in pill form, until I picked up my RX and I had to talk to the Pharmacist who advised me to be careful with the medication-wash my hands, clean the counters it touched, don't let anyone else touch it! (what in the world?) I was diagnosed with ET (Calr mutation) December 2025. I found out, after having my yearly physical exam, that my platelet count was at 1053. After a harrowing couple of weeks, I had a bone marrow biopsy and ET was confirmed. I now take Hydroxyurea 500mg each day and 1 baby aspirin in the AM and 1 in PM. Have had some dental issues, painful foot cramps at night, sometimes lower leg also, fatigue in the afternoon. Also some vertigo. Not sure if the disease or the drug is responsible for the symptoms. I exercise 3 or 4 times a week. My last blood test my platelets were at 553. I am a 74 year old woman, living in Minnesota (about 110 miles from Mayo in Rochester.) I decided to make an appointment at Mayo, where I finally got some answers, felt more hopeful about the future, and found this group.

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drbart86 | @drbart86 | 3 days ago
In reply to @suzannebhi "My husband was diagnosed through his routine blood work in 2024. Ever since then, we have..." + (show)
Profile picture for suzannebhi @suzannebhi

My husband was diagnosed through his routine blood work in 2024. Ever since then, we have both lived in constant fear.
I have read other forums, and I don't see anything about the new drug in trials(Incyte), or any advocacy to expedite it. I don't even know if that's even a thing. I am sorry if I sound immature, but is anyone here dealing with the whys and oh my god, what will happen in the future? How are you dealing with it?
He does not want to go on medication and wants to try alternative therapies. Is anyone aware of any therapies that can lower the platelet counts?
I thank you all for sharing your personal experiences with the disease, and I wish you all well. Can't wait for the medicine to become available to the public so we have a cure.

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@suzannebhi First of all - take a deep breath. As noted here - upon first hearing it is hard to accept. There are lots of good places to find info. Having been diagnosed over 8 years ago, most of my life has been mostly normal, routine bloodwork and appropriated meds to control platelets. From what I see most start with hydroxyurea (I did) and it is quite effective for most, in these chats, I have seen some on it for many years without issue. I started there and am now on Jakafi as I am one that did not tolerate HU. My suggestions are to reach out to find a specialist ( see https://mpncancerconnection.org/mpn-experts/ ); if one is not close to you, at least go see them and have your local hematologist work with them. I am lucky to live near one and it has made a huge difference in my life; typical is monthly blood work and quarterly visits. If you are interested in trials, it will also be important to work with a specialist at a research institution. There are places to find trials through various sites as well. I am currently on one sponsored by Merck - unfortunately I am on a control arm, which is my normal Jakafi treatment, but need to have controls. There is trial open for those with CALR mutation with a bispecific antibody - it looks really promising (an hopefully I can move to that one).

As you navigate this journey, reach out to organizations that can offer support, one of the best is Blood Cancer United; they have lots of resources for patients and caregivers. One program that is often very helpful is the First Connections program ( https://bloodcancerunited.org/resources/patients/peer-to-peer-support ) that puts you in contact with other patients - no medical advice, just somebody else on your journey (Incyte used to have a similar program, but has discontinued). BCU also has a number of events. These have been helpful, as MPNs are rare it may be hard to find somebody near, but I was lucky and met a PV patient who lives near me though a conference and while are conditions are different, they have similarities and just having each other to visit with is great.

Other good resources are MPN Research Foundation, Voices of MPN, and there are others.

Again a deep breath, don't panic, and rely on others for support.

REPLY
2 replies
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janemc | @janemc | 2 days ago
In reply to @drbart86 "@suzannebhi First of all - take a deep breath. As noted here - upon first hearing..." + (show)
Profile picture for drbart86 @drbart86

@suzannebhi First of all - take a deep breath. As noted here - upon first hearing it is hard to accept. There are lots of good places to find info. Having been diagnosed over 8 years ago, most of my life has been mostly normal, routine bloodwork and appropriated meds to control platelets. From what I see most start with hydroxyurea (I did) and it is quite effective for most, in these chats, I have seen some on it for many years without issue. I started there and am now on Jakafi as I am one that did not tolerate HU. My suggestions are to reach out to find a specialist ( see https://mpncancerconnection.org/mpn-experts/ ); if one is not close to you, at least go see them and have your local hematologist work with them. I am lucky to live near one and it has made a huge difference in my life; typical is monthly blood work and quarterly visits. If you are interested in trials, it will also be important to work with a specialist at a research institution. There are places to find trials through various sites as well. I am currently on one sponsored by Merck - unfortunately I am on a control arm, which is my normal Jakafi treatment, but need to have controls. There is trial open for those with CALR mutation with a bispecific antibody - it looks really promising (an hopefully I can move to that one).

As you navigate this journey, reach out to organizations that can offer support, one of the best is Blood Cancer United; they have lots of resources for patients and caregivers. One program that is often very helpful is the First Connections program ( https://bloodcancerunited.org/resources/patients/peer-to-peer-support ) that puts you in contact with other patients - no medical advice, just somebody else on your journey (Incyte used to have a similar program, but has discontinued). BCU also has a number of events. These have been helpful, as MPNs are rare it may be hard to find somebody near, but I was lucky and met a PV patient who lives near me though a conference and while are conditions are different, they have similarities and just having each other to visit with is great.

Other good resources are MPN Research Foundation, Voices of MPN, and there are others.

Again a deep breath, don't panic, and rely on others for support.

Jump to this post

@drbart86

Thank you for taking part in the clinical trial. It's a huge commitment!

Be proud: You are moving medicine forward.

REPLY
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suzannebhi | @suzannebhi | 1 day ago
In reply to @drbart86 "@suzannebhi First of all - take a deep breath. As noted here - upon first hearing..." + (show)
Profile picture for drbart86 @drbart86

@suzannebhi First of all - take a deep breath. As noted here - upon first hearing it is hard to accept. There are lots of good places to find info. Having been diagnosed over 8 years ago, most of my life has been mostly normal, routine bloodwork and appropriated meds to control platelets. From what I see most start with hydroxyurea (I did) and it is quite effective for most, in these chats, I have seen some on it for many years without issue. I started there and am now on Jakafi as I am one that did not tolerate HU. My suggestions are to reach out to find a specialist ( see https://mpncancerconnection.org/mpn-experts/ ); if one is not close to you, at least go see them and have your local hematologist work with them. I am lucky to live near one and it has made a huge difference in my life; typical is monthly blood work and quarterly visits. If you are interested in trials, it will also be important to work with a specialist at a research institution. There are places to find trials through various sites as well. I am currently on one sponsored by Merck - unfortunately I am on a control arm, which is my normal Jakafi treatment, but need to have controls. There is trial open for those with CALR mutation with a bispecific antibody - it looks really promising (an hopefully I can move to that one).

As you navigate this journey, reach out to organizations that can offer support, one of the best is Blood Cancer United; they have lots of resources for patients and caregivers. One program that is often very helpful is the First Connections program ( https://bloodcancerunited.org/resources/patients/peer-to-peer-support ) that puts you in contact with other patients - no medical advice, just somebody else on your journey (Incyte used to have a similar program, but has discontinued). BCU also has a number of events. These have been helpful, as MPNs are rare it may be hard to find somebody near, but I was lucky and met a PV patient who lives near me though a conference and while are conditions are different, they have similarities and just having each other to visit with is great.

Other good resources are MPN Research Foundation, Voices of MPN, and there are others.

Again a deep breath, don't panic, and rely on others for support.

Jump to this post

@drbart86, thank you so much for sharing your journey and participating in trials for a better future for all. While I just joined this forum, my husband has been on forums ever since he was diagnosed and has read horrific stories about HU, which adds to the fear. I am reading that many people have benefited from various medicines.
We are currently working with a research hematologist. I wish you well, and I thank you for reminding me to breathe. Even though I am a mindfulness trainer, I forget sometimes :).

REPLY
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drbart86 | @drbart86 | 1 day ago

Suzanne - I understand your hesitancy about HU. It work very well with me for about 3-4 years and as you have seen there are some that have been on it for decades without any issues (as with the news, most only share the bad, not the good). That is the funny thing about biology - it does not always read the book! I wish the HU still was effective for me - a few $ per month is a whole lot better than ~$20K/month (fortunately for insurance that is not all out-of-pocket!).

As with anything, do your homework and in the end need to have a doc that you truly trust. We have so few options, and none are perfect. As noted it is always good to visit with others and know the journey different for all, my greatest help was meeting a fellow MPN sufferer (PV) that lives close that we can both at least support each other.

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