@lynnebgraham
Thank you for your response. Your question about alternatives to HU has been added. Can you tell me why you are looking for alternatives to HU? And what kind?
Regarding you question whether it is hereditary, what does the 'it' refer to? Can you let me know why this is important to you, so I can refine the question and thus explore a better possible answer?
This is what I do know at this point: Regarding the JAK2 gene mutation, this is NOT hereditary in the sense that you are NOT born with it. I am interested in the JAK2 mutation, because that is what I have and was used to make my diagnosis of having ET. The JAK2 mutation develops later in life for reasons currently not understood. I have confirmed this information with my hemo at my initial visit. I'm personally wondering what's behind or drives the JAK2 mutation and have this in my question bank.
And yes, I will be back with what I learn eventually.
@lynnebgraham
Thank you for your response. Your question about alternatives to HU has been added. Can you tell me why you are looking for alternatives to HU? And what kind?
Regarding you question whether it is hereditary, what does the 'it' refer to? Can you let me know why this is important to you, so I can refine the question and thus explore a better possible answer?
This is what I do know at this point: Regarding the JAK2 gene mutation, this is NOT hereditary in the sense that you are NOT born with it. I am interested in the JAK2 mutation, because that is what I have and was used to make my diagnosis of having ET. The JAK2 mutation develops later in life for reasons currently not understood. I have confirmed this information with my hemo at my initial visit. I'm personally wondering what's behind or drives the JAK2 mutation and have this in my question bank.
And yes, I will be back with what I learn eventually.
Hi @gigi05 You’re getting some great question suggestions from our helpful members! I can toss in info on the JAK2 mutation for you. We tend to pick up mutations along our life journey for whatever reason. Our bone marrow produces several million cells per second! Each with staggering precision. So even one tiny glitch in a strand of DNA can change the course of your history. A cool statistic I picked up recently from an outstanding book on the history of bone marrow transplantation. Our body produces 200 billion red cells, 400 billion platelets and 10 billion wbc daily! Mind blowing, at least it was for me.
Here are some go-to articles that I recommend for anyone wanting to learn about the JAK2 mutation and what it can mean for developing an MPN such as PV, ET or MF.
@loribmt Yes, that makes total sense. I'm interested in exploring what that familial lineage is, which may have driven the JAK2 mutation, as I mentioned above. What factors influenced this mutation, and now that I have it, what is my best course of action? I'm wondering, did anyone feel somewhat guilty, like having caused it even if inadvertently?
@loribmt Yes, that makes total sense. I'm interested in exploring what that familial lineage is, which may have driven the JAK2 mutation, as I mentioned above. What factors influenced this mutation, and now that I have it, what is my best course of action? I'm wondering, did anyone feel somewhat guilty, like having caused it even if inadvertently?
You may never find the underlying cause for when and why the mutation happened. It may have nothing to do at all with your relatives and if it did, no one deliberately passed it along. Sometimes it’s just the luck of the draw when a mutation happens. From my understanding of cancers/disorders, the JAK2 mutation one of the most common.
I didn’t have anyone in my family, either side, who had a blood cancer in the last 4 generations, other than my brother who was doused with agent orange in the army. So there was a blatant cause for his Hodgkins’ lymphoma back in 1969. I was concerned for other forms of cancer though. So I spent most of my adult life eating healthy, avoiding toxins, exercising, no vices…and out of the blue, I developed AML, rapid onset and low odds.
Talk about being clobbered from behind! I had no clue and never even considered a blood cancer. There were 3 random mutations that caused the cancer to develop and no obvious links anywhere. I didn’t even have symptoms until 3 weeks before I was diagnosed. Then admitted to the hospital that day for 5 weeks on a fight for my life. I kept wondering how in the world this happened!! I’ve since learned that it can be something innocuous like a stray gamma ray shooting through the earth or whatever else we may be exposed to on our life journey. All it takes is one little change in a fragment of DNA to change the course into another direction. I will never know what caused my cancer and you most likely will never know the reason behind the mutated JAK2.
Those articles I posted in a previous reply should be informative to answer many of your questions about JAK2. There are many more online from credible sources. Here’s another for you:
Blood-Cancer.com https://blood-cancer.com/clinical/jak2-mutation
Like I mentioned before about the staggering amount of blood cells produced daily in our bodies that have to replicate with a flawless degree of accuracy, it’s amazing we don’t all have some for of blood cancer. Well, we do all have cancerous cells circulating through our bodies daily. However, our immune system seeks and destroys them. And that’s where the mutations come into play. The defective cells can circumvent our immune system, escaping detection, allowing them to proliferate out of control. Eventually, without treatment to either curtail the production of the cells or knock down the volume, they can overtake our healthy blood and be the end of us.
So, your question, “What is the best course of action?” Talk to your oncologist, listen to their advice, follow their suggested treatment plans. If you’re not comfortable with the diagnosis then get 2nd or 3rd opinion. You’re doing the right thing with compiling questions to ask your doctor.
@lynnebgraham
Thank you for your response. Your question about alternatives to HU has been added. Can you tell me why you are looking for alternatives to HU? And what kind?
Regarding you question whether it is hereditary, what does the 'it' refer to? Can you let me know why this is important to you, so I can refine the question and thus explore a better possible answer?
This is what I do know at this point: Regarding the JAK2 gene mutation, this is NOT hereditary in the sense that you are NOT born with it. I am interested in the JAK2 mutation, because that is what I have and was used to make my diagnosis of having ET. The JAK2 mutation develops later in life for reasons currently not understood. I have confirmed this information with my hemo at my initial visit. I'm personally wondering what's behind or drives the JAK2 mutation and have this in my question bank.
And yes, I will be back with what I learn eventually.
Just that I had been on Anagrelide for 16/17 years, with only tiredness. Platelets always came under control while on it. Found out that there isn'tmuch differencebetweenboth these drugs, Hu being a chemotherapy tablet and Anagrelide not. Now on HU for 3 months, all good so far tiredness and a bit of sun sensitivity so far. Good luck with your Dr.
You may never find the underlying cause for when and why the mutation happened. It may have nothing to do at all with your relatives and if it did, no one deliberately passed it along. Sometimes it’s just the luck of the draw when a mutation happens. From my understanding of cancers/disorders, the JAK2 mutation one of the most common.
I didn’t have anyone in my family, either side, who had a blood cancer in the last 4 generations, other than my brother who was doused with agent orange in the army. So there was a blatant cause for his Hodgkins’ lymphoma back in 1969. I was concerned for other forms of cancer though. So I spent most of my adult life eating healthy, avoiding toxins, exercising, no vices…and out of the blue, I developed AML, rapid onset and low odds.
Talk about being clobbered from behind! I had no clue and never even considered a blood cancer. There were 3 random mutations that caused the cancer to develop and no obvious links anywhere. I didn’t even have symptoms until 3 weeks before I was diagnosed. Then admitted to the hospital that day for 5 weeks on a fight for my life. I kept wondering how in the world this happened!! I’ve since learned that it can be something innocuous like a stray gamma ray shooting through the earth or whatever else we may be exposed to on our life journey. All it takes is one little change in a fragment of DNA to change the course into another direction. I will never know what caused my cancer and you most likely will never know the reason behind the mutated JAK2.
Those articles I posted in a previous reply should be informative to answer many of your questions about JAK2. There are many more online from credible sources. Here’s another for you:
Blood-Cancer.com https://blood-cancer.com/clinical/jak2-mutation
Like I mentioned before about the staggering amount of blood cells produced daily in our bodies that have to replicate with a flawless degree of accuracy, it’s amazing we don’t all have some for of blood cancer. Well, we do all have cancerous cells circulating through our bodies daily. However, our immune system seeks and destroys them. And that’s where the mutations come into play. The defective cells can circumvent our immune system, escaping detection, allowing them to proliferate out of control. Eventually, without treatment to either curtail the production of the cells or knock down the volume, they can overtake our healthy blood and be the end of us.
So, your question, “What is the best course of action?” Talk to your oncologist, listen to their advice, follow their suggested treatment plans. If you’re not comfortable with the diagnosis then get 2nd or 3rd opinion. You’re doing the right thing with compiling questions to ask your doctor.
It's SO helpful for cancer patients to hear that the cancer is not their fault! Many people are scrupulous about their diet and exercise, but will develop mutations that trigger cancer anyway. Industrial pollution they cannot control in the air, soil, or water, and from pollution released during climatic events like floods and wildfires are possible culprits. I spoke to an MPN specialist not long after I was diagnosed who said that clinicians sometimes ask about known exposure to toxic substances, but that trying to figure out what someone has been exposed to over a lifetime that might have tripped the mutation switch is just about impossible. The Veterans Administration does keep a presumptive list of carcinogens that affect service members. That is at least a start in identifying potential environmental cancer causing agents.
Even tho MPN mutations are not inherited, my oncologist told me to tell my son and brother to be alert to changes in blood counts, since a predisposition to mutation might be inherited. My dad also had ET.
Thanks @nohrt4me. I'm one of those people to whom diet and exercise is important, and has been part of my lifestyle forever. So, even though cognitively I totally get it, it's not my fault, or, I could not have done anything to have prevented it, it's SO helpful to hear you say that "it's SO helpful for cancer patients to hear that the cancer is not their fault! Haha, and yes, I'm just one of these 'responsible ' people, and somehow have this idea that I 'should' have done better, like maybe there were a few glasses of wine too much. Add to his that I did not even have an aspirin in the house at time of diagnosis, have been lucky enough to not have needed long term meds, and literally never have an ache or pain or sniffle, the whole thing felt like a blow to the head.
You may never find the underlying cause for when and why the mutation happened. It may have nothing to do at all with your relatives and if it did, no one deliberately passed it along. Sometimes it’s just the luck of the draw when a mutation happens. From my understanding of cancers/disorders, the JAK2 mutation one of the most common.
I didn’t have anyone in my family, either side, who had a blood cancer in the last 4 generations, other than my brother who was doused with agent orange in the army. So there was a blatant cause for his Hodgkins’ lymphoma back in 1969. I was concerned for other forms of cancer though. So I spent most of my adult life eating healthy, avoiding toxins, exercising, no vices…and out of the blue, I developed AML, rapid onset and low odds.
Talk about being clobbered from behind! I had no clue and never even considered a blood cancer. There were 3 random mutations that caused the cancer to develop and no obvious links anywhere. I didn’t even have symptoms until 3 weeks before I was diagnosed. Then admitted to the hospital that day for 5 weeks on a fight for my life. I kept wondering how in the world this happened!! I’ve since learned that it can be something innocuous like a stray gamma ray shooting through the earth or whatever else we may be exposed to on our life journey. All it takes is one little change in a fragment of DNA to change the course into another direction. I will never know what caused my cancer and you most likely will never know the reason behind the mutated JAK2.
Those articles I posted in a previous reply should be informative to answer many of your questions about JAK2. There are many more online from credible sources. Here’s another for you:
Blood-Cancer.com https://blood-cancer.com/clinical/jak2-mutation
Like I mentioned before about the staggering amount of blood cells produced daily in our bodies that have to replicate with a flawless degree of accuracy, it’s amazing we don’t all have some for of blood cancer. Well, we do all have cancerous cells circulating through our bodies daily. However, our immune system seeks and destroys them. And that’s where the mutations come into play. The defective cells can circumvent our immune system, escaping detection, allowing them to proliferate out of control. Eventually, without treatment to either curtail the production of the cells or knock down the volume, they can overtake our healthy blood and be the end of us.
So, your question, “What is the best course of action?” Talk to your oncologist, listen to their advice, follow their suggested treatment plans. If you’re not comfortable with the diagnosis then get 2nd or 3rd opinion. You’re doing the right thing with compiling questions to ask your doctor.
@loribmt
Thanks so much for your thorough reply and sharing your experience of your diagnosis and subsequent hospitalization. I can only imagine your shock and bewilderment as your brain was trying to catch up to what was happening. I may have missed it, but how are you now? How are you feeling, and are you still taking meds?
Today I am wondering about metabolism, and methylation in relation to these mutations and cancer. Have you come across anything in this area that might be of interest? (Besides the eating your greens and fruits is good for you --haha)
Just that I had been on Anagrelide for 16/17 years, with only tiredness. Platelets always came under control while on it. Found out that there isn'tmuch differencebetweenboth these drugs, Hu being a chemotherapy tablet and Anagrelide not. Now on HU for 3 months, all good so far tiredness and a bit of sun sensitivity so far. Good luck with your Dr.
@lynnebgraham Thank you. What have you done to deal with your tiredness? What worked, what did not? Is the tiredness different from HU, than from Anagrelide?
Thank you for you good wishes.
Thanks @nohrt4me. I'm one of those people to whom diet and exercise is important, and has been part of my lifestyle forever. So, even though cognitively I totally get it, it's not my fault, or, I could not have done anything to have prevented it, it's SO helpful to hear you say that "it's SO helpful for cancer patients to hear that the cancer is not their fault! Haha, and yes, I'm just one of these 'responsible ' people, and somehow have this idea that I 'should' have done better, like maybe there were a few glasses of wine too much. Add to his that I did not even have an aspirin in the house at time of diagnosis, have been lucky enough to not have needed long term meds, and literally never have an ache or pain or sniffle, the whole thing felt like a blow to the head.
I come from a family of smart and empathetic people who were burdened with addiction and mental illness. I learned from their mistakes and tried to arrange my life somewhat differently.
I hope that the "good choices" contributes to improved attitude and general enjoyment of life, enhanced stamina, and maybe even better response to meds and longer life down the road.
Being in good shape always puts you ahead of the game!
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@lynnebgraham
Thank you for your response. Your question about alternatives to HU has been added. Can you tell me why you are looking for alternatives to HU? And what kind?
Regarding you question whether it is hereditary, what does the 'it' refer to? Can you let me know why this is important to you, so I can refine the question and thus explore a better possible answer?
This is what I do know at this point: Regarding the JAK2 gene mutation, this is NOT hereditary in the sense that you are NOT born with it. I am interested in the JAK2 mutation, because that is what I have and was used to make my diagnosis of having ET. The JAK2 mutation develops later in life for reasons currently not understood. I have confirmed this information with my hemo at my initial visit. I'm personally wondering what's behind or drives the JAK2 mutation and have this in my question bank.
And yes, I will be back with what I learn eventually.
-
Like -
Helpful -
Hug
3 ReactionsHi @gigi05 You’re getting some great question suggestions from our helpful members! I can toss in info on the JAK2 mutation for you. We tend to pick up mutations along our life journey for whatever reason. Our bone marrow produces several million cells per second! Each with staggering precision. So even one tiny glitch in a strand of DNA can change the course of your history. A cool statistic I picked up recently from an outstanding book on the history of bone marrow transplantation. Our body produces 200 billion red cells, 400 billion platelets and 10 billion wbc daily! Mind blowing, at least it was for me.
Here are some go-to articles that I recommend for anyone wanting to learn about the JAK2 mutation and what it can mean for developing an MPN such as PV, ET or MF.
From Verywellhealth:
https://www.verywellhealth.com/jak2-mutation-5217909
From Healthline:
https://www.healthline.com/health/myelofibrosis/what-is-the-jak2-gene
From Pub Med:
https://pmc.ncbi.nlm.nih.gov/articles/PMC6721738/
While some mutations aren’t considered hereditary in themselves, there can be familial lineage that may factor into how your body handles a mutation or making it more prone to happening. Does that make sense?
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Hug
3 Reactions@loribmt Yes, that makes total sense. I'm interested in exploring what that familial lineage is, which may have driven the JAK2 mutation, as I mentioned above. What factors influenced this mutation, and now that I have it, what is my best course of action? I'm wondering, did anyone feel somewhat guilty, like having caused it even if inadvertently?
-
Like -
Helpful -
Hug
1 ReactionYou may never find the underlying cause for when and why the mutation happened. It may have nothing to do at all with your relatives and if it did, no one deliberately passed it along. Sometimes it’s just the luck of the draw when a mutation happens. From my understanding of cancers/disorders, the JAK2 mutation one of the most common.
I didn’t have anyone in my family, either side, who had a blood cancer in the last 4 generations, other than my brother who was doused with agent orange in the army. So there was a blatant cause for his Hodgkins’ lymphoma back in 1969. I was concerned for other forms of cancer though. So I spent most of my adult life eating healthy, avoiding toxins, exercising, no vices…and out of the blue, I developed AML, rapid onset and low odds.
Talk about being clobbered from behind! I had no clue and never even considered a blood cancer. There were 3 random mutations that caused the cancer to develop and no obvious links anywhere. I didn’t even have symptoms until 3 weeks before I was diagnosed. Then admitted to the hospital that day for 5 weeks on a fight for my life. I kept wondering how in the world this happened!! I’ve since learned that it can be something innocuous like a stray gamma ray shooting through the earth or whatever else we may be exposed to on our life journey. All it takes is one little change in a fragment of DNA to change the course into another direction. I will never know what caused my cancer and you most likely will never know the reason behind the mutated JAK2.
Those articles I posted in a previous reply should be informative to answer many of your questions about JAK2. There are many more online from credible sources. Here’s another for you:
Blood-Cancer.com
https://blood-cancer.com/clinical/jak2-mutation
Like I mentioned before about the staggering amount of blood cells produced daily in our bodies that have to replicate with a flawless degree of accuracy, it’s amazing we don’t all have some for of blood cancer. Well, we do all have cancerous cells circulating through our bodies daily. However, our immune system seeks and destroys them. And that’s where the mutations come into play. The defective cells can circumvent our immune system, escaping detection, allowing them to proliferate out of control. Eventually, without treatment to either curtail the production of the cells or knock down the volume, they can overtake our healthy blood and be the end of us.
So, your question, “What is the best course of action?” Talk to your oncologist, listen to their advice, follow their suggested treatment plans. If you’re not comfortable with the diagnosis then get 2nd or 3rd opinion. You’re doing the right thing with compiling questions to ask your doctor.
-
Like -
Helpful -
Hug
5 ReactionsJust that I had been on Anagrelide for 16/17 years, with only tiredness. Platelets always came under control while on it. Found out that there isn'tmuch differencebetweenboth these drugs, Hu being a chemotherapy tablet and Anagrelide not. Now on HU for 3 months, all good so far tiredness and a bit of sun sensitivity so far. Good luck with your Dr.
-
Like -
Helpful -
Hug
3 ReactionsIt's SO helpful for cancer patients to hear that the cancer is not their fault! Many people are scrupulous about their diet and exercise, but will develop mutations that trigger cancer anyway. Industrial pollution they cannot control in the air, soil, or water, and from pollution released during climatic events like floods and wildfires are possible culprits. I spoke to an MPN specialist not long after I was diagnosed who said that clinicians sometimes ask about known exposure to toxic substances, but that trying to figure out what someone has been exposed to over a lifetime that might have tripped the mutation switch is just about impossible. The Veterans Administration does keep a presumptive list of carcinogens that affect service members. That is at least a start in identifying potential environmental cancer causing agents.
Even tho MPN mutations are not inherited, my oncologist told me to tell my son and brother to be alert to changes in blood counts, since a predisposition to mutation might be inherited. My dad also had ET.
-
Like -
Helpful -
Hug
8 ReactionsThanks @nohrt4me. I'm one of those people to whom diet and exercise is important, and has been part of my lifestyle forever. So, even though cognitively I totally get it, it's not my fault, or, I could not have done anything to have prevented it, it's SO helpful to hear you say that "it's SO helpful for cancer patients to hear that the cancer is not their fault! Haha, and yes, I'm just one of these 'responsible ' people, and somehow have this idea that I 'should' have done better, like maybe there were a few glasses of wine too much. Add to his that I did not even have an aspirin in the house at time of diagnosis, have been lucky enough to not have needed long term meds, and literally never have an ache or pain or sniffle, the whole thing felt like a blow to the head.
-
Like -
Helpful -
Hug
6 Reactions@loribmt
Thanks so much for your thorough reply and sharing your experience of your diagnosis and subsequent hospitalization. I can only imagine your shock and bewilderment as your brain was trying to catch up to what was happening. I may have missed it, but how are you now? How are you feeling, and are you still taking meds?
Today I am wondering about metabolism, and methylation in relation to these mutations and cancer. Have you come across anything in this area that might be of interest? (Besides the eating your greens and fruits is good for you --haha)
-
Like -
Helpful -
Hug
3 Reactions@lynnebgraham Thank you. What have you done to deal with your tiredness? What worked, what did not? Is the tiredness different from HU, than from Anagrelide?
Thank you for you good wishes.
-
Like -
Helpful -
Hug
2 ReactionsI come from a family of smart and empathetic people who were burdened with addiction and mental illness. I learned from their mistakes and tried to arrange my life somewhat differently.
I hope that the "good choices" contributes to improved attitude and general enjoyment of life, enhanced stamina, and maybe even better response to meds and longer life down the road.
Being in good shape always puts you ahead of the game!
-
Like -
Helpful -
Hug
6 Reactions