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!
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!
@nohrt4me I'm sorry to hear that your family members were burdened with addiction and mental illness. That can cause a lot of suffering. I liked hearing that you were open to learning from their mistakes and tried to do things a bit differently. That's wisdom and resolve right there. Whenever we can focus on our life situations as experiments that we may learn something from, or when we cannot find anything to learn ,we can choose to hold ourselves with lots of compassion, and kindness, nothing is lost, and we emerge ready to move forward.
Your post made me think of the book that ignited my passion for the healing power of food and (mental) well-being. "Diet and Nutrition" by Rudolph Ballantine. I think he was trained as a psychiatrist, and no doubt his work was considered revolutionary at the time.
@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)
Hi @gigi05. That was just the abbreviated version of the AML/bone marrow transplant story. 😂 But bottom line, I’m coming up on my 6 year ‘CELLeversary” the end of June and feel fantastic, as though none of this ever happened. And no, I no longer take any meds except Calcium supplements and Vit D3.
I’m now 71, still walk at least 7 miles daily, exercise, blah blah blah…But…And it’s a big but…while I focus on healthy foods, lifestyle and still read labels, I am not paranoid or rabid about my health! There were no dramatic changes to my diet after cancer, such as drinking a quart of raw asparagus juice daily, or maxing out on supplements. My husband and I have pretty much followed the Mediterranean diet for 30+years. It served us well and though I got cancer, diet wasn’t a contributing factor. But it did contribute to my overall, continued excellent health.
So, you’re asking about metabolism and methylation. I’d say, don’t dwell on all the buzz words. If you eat healthy, exercise, and make those ‘good choices’, you’re already getting the nutrients you need and your metabolism should be an appropriate level. You can’t reverse the mutation that has already happened by changing your diet.
Touching on what @nohrt4me mentioned in her comment, “ 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.”…she nailed it!
Our good choices can absolutely make difference with our health and wellbeing and how our body responds to an illness and recovery. I was told many times by my local hemo/oncol team and my Mayo team, that my lifetime of healthy diet, exercise, ‘good life choices’ and positivity is what helped me endure and recover quickly from that medical odyssey.
@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.
Hi, I do feel more fatigue taking the HU than Anagrelide. I like to get out into the garden for at least an hour when I can, this is great mentally as well. I also have a nap in the afternoon, can be from 1 to 1 1/2 hours.
Hi @gigi05. That was just the abbreviated version of the AML/bone marrow transplant story. 😂 But bottom line, I’m coming up on my 6 year ‘CELLeversary” the end of June and feel fantastic, as though none of this ever happened. And no, I no longer take any meds except Calcium supplements and Vit D3.
I’m now 71, still walk at least 7 miles daily, exercise, blah blah blah…But…And it’s a big but…while I focus on healthy foods, lifestyle and still read labels, I am not paranoid or rabid about my health! There were no dramatic changes to my diet after cancer, such as drinking a quart of raw asparagus juice daily, or maxing out on supplements. My husband and I have pretty much followed the Mediterranean diet for 30+years. It served us well and though I got cancer, diet wasn’t a contributing factor. But it did contribute to my overall, continued excellent health.
So, you’re asking about metabolism and methylation. I’d say, don’t dwell on all the buzz words. If you eat healthy, exercise, and make those ‘good choices’, you’re already getting the nutrients you need and your metabolism should be an appropriate level. You can’t reverse the mutation that has already happened by changing your diet.
Touching on what @nohrt4me mentioned in her comment, “ 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.”…she nailed it!
Our good choices can absolutely make difference with our health and wellbeing and how our body responds to an illness and recovery. I was told many times by my local hemo/oncol team and my Mayo team, that my lifetime of healthy diet, exercise, ‘good life choices’ and positivity is what helped me endure and recover quickly from that medical odyssey.
@loribmt I am really delighted to hear that you are feeling fantastic as though your illness never happened, and are not (even) on any meds. That's quite something. It's also very encouraging to hear. Totally agree with you to keep things in perspective in terms of diet, definitely no 'quarts of asparagus juice' or broccoli by the pound here either. We also have been following a Mediterranean style diet for a long time. And, I will confess, I am a bit of a foodie. Good food and wine are a source of pleasure.
I read your longer version of your story with interest. Thank you. Again, it inspires calm confidence to know healing and recovery is possible , and that good science and doctors are out there. So, we don't need to feel like we are 'going it alone'.
Thank you for your answer. It's true they are blood cancers, although they can be slow yet progressive to develop. Because you can live a long life with these blood cancers with treatment, some people think they are merely conditions, but they are not. It's good to take the diagnosis seriously as a result. I had family members tell me unsolicited that I should not worry because I really don't have cancer. Having read through the posts, I'm feeling a bit better about taking the HU although I have not started yet. I'm having blood work done in a week and then will know what my platelet levels are, and how much they might have gone up, and then I will start. I have scheduled a visit at the mayo clinic for a second opinion, first available was late May. Ahead of my visit, I'm trying to prepare by formulating questions. If you have any suggestions, I would love to know.
I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.
I was diagnosed with ET 2 years ago and was told that up until 10 years ago it was considered to be a blood disorder but the world health organisation decided to classify it as a cancer.
I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.
I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.
How are you doing with the MF? Any change in treatment protocols? I have ET-CALR x 17 years, HU x 6 years. I understand CALR makes me somewhat more likely to develop MF, tho there seem to be genetic variables within CALR mutations that are still not well understood. But my hemo explained that anybody with ET will progress if they live long enough. Thanks for sharing your experiences. It's helpful to know how these things play out for others over decades. So many on here are very newly diagnosed, dealing with that initial shock, and cannot (yet) identify with us long-termers.
I seen my hematologist yesterday. In January my platelets were 397. I take an aspirin daily while taking HU 500 mg 3X a week. Yesterday my tests revealed a new number…382! Feeling confident, my next visit will be in 6 months. My script will stay the same.
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3 Reactions@nohrt4me I'm sorry to hear that your family members were burdened with addiction and mental illness. That can cause a lot of suffering. I liked hearing that you were open to learning from their mistakes and tried to do things a bit differently. That's wisdom and resolve right there. Whenever we can focus on our life situations as experiments that we may learn something from, or when we cannot find anything to learn ,we can choose to hold ourselves with lots of compassion, and kindness, nothing is lost, and we emerge ready to move forward.
Your post made me think of the book that ignited my passion for the healing power of food and (mental) well-being. "Diet and Nutrition" by Rudolph Ballantine. I think he was trained as a psychiatrist, and no doubt his work was considered revolutionary at the time.
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Like -
Helpful -
Hug
1 ReactionHi @gigi05. That was just the abbreviated version of the AML/bone marrow transplant story. 😂 But bottom line, I’m coming up on my 6 year ‘CELLeversary” the end of June and feel fantastic, as though none of this ever happened. And no, I no longer take any meds except Calcium supplements and Vit D3.
I’m now 71, still walk at least 7 miles daily, exercise, blah blah blah…But…And it’s a big but…while I focus on healthy foods, lifestyle and still read labels, I am not paranoid or rabid about my health! There were no dramatic changes to my diet after cancer, such as drinking a quart of raw asparagus juice daily, or maxing out on supplements. My husband and I have pretty much followed the Mediterranean diet for 30+years. It served us well and though I got cancer, diet wasn’t a contributing factor. But it did contribute to my overall, continued excellent health.
So, you’re asking about metabolism and methylation. I’d say, don’t dwell on all the buzz words. If you eat healthy, exercise, and make those ‘good choices’, you’re already getting the nutrients you need and your metabolism should be an appropriate level. You can’t reverse the mutation that has already happened by changing your diet.
Touching on what @nohrt4me mentioned in her comment, “ 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.”…she nailed it!
Our good choices can absolutely make difference with our health and wellbeing and how our body responds to an illness and recovery. I was told many times by my local hemo/oncol team and my Mayo team, that my lifetime of healthy diet, exercise, ‘good life choices’ and positivity is what helped me endure and recover quickly from that medical odyssey.
Thought I’d toss in these two stories for you.
This is the longer version of my AML/BMT story;
https://connect.mayoclinic.org/comment/335081/
This article, by a Mayo writer, shares the story of having the honor to actually meet with one of the people I mentored through her transplant. It’s a cool story! The young woman and I still chat and she’s now in Grad school…working towards her PhD.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I think you will learn a great deal with your oncology appt. Keep those questions handy. From my experience, my doctors appreciated having an inquisitive patient.
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6 ReactionsHi, I do feel more fatigue taking the HU than Anagrelide. I like to get out into the garden for at least an hour when I can, this is great mentally as well. I also have a nap in the afternoon, can be from 1 to 1 1/2 hours.
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Helpful -
Hug
3 Reactions@loribmt I am really delighted to hear that you are feeling fantastic as though your illness never happened, and are not (even) on any meds. That's quite something. It's also very encouraging to hear. Totally agree with you to keep things in perspective in terms of diet, definitely no 'quarts of asparagus juice' or broccoli by the pound here either. We also have been following a Mediterranean style diet for a long time. And, I will confess, I am a bit of a foodie. Good food and wine are a source of pleasure.
I read your longer version of your story with interest. Thank you. Again, it inspires calm confidence to know healing and recovery is possible , and that good science and doctors are out there. So, we don't need to feel like we are 'going it alone'.
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Like -
Helpful -
Hug
5 ReactionsI was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.
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Helpful -
Hug
3 ReactionsI was diagnosed with ET 2 years ago and was told that up until 10 years ago it was considered to be a blood disorder but the world health organisation decided to classify it as a cancer.
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1 ReactionThink positive. This drug gave you 15 years to enjoy. Let’s be grateful for that. Try to have a good attitude. Believe. Hang in there!
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1 ReactionHow are you doing with the MF? Any change in treatment protocols? I have ET-CALR x 17 years, HU x 6 years. I understand CALR makes me somewhat more likely to develop MF, tho there seem to be genetic variables within CALR mutations that are still not well understood. But my hemo explained that anybody with ET will progress if they live long enough. Thanks for sharing your experiences. It's helpful to know how these things play out for others over decades. So many on here are very newly diagnosed, dealing with that initial shock, and cannot (yet) identify with us long-termers.
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Like -
Helpful -
Hug
3 ReactionsI seen my hematologist yesterday. In January my platelets were 397. I take an aspirin daily while taking HU 500 mg 3X a week. Yesterday my tests revealed a new number…382! Feeling confident, my next visit will be in 6 months. My script will stay the same.