I have never taken Hydrea, but have had four small basal cell carcinoma skin cancers removed already! I am blonde blue eyed and spent time outside as a kid riding horses and swimming all summer long as we were off back then. I did wear a visor, but had the skin cancers on my shoulder, neck, tummy, and even one behind my ear. All were on my left side. I have worn sunscreen, a hat, and sunglasses since being adult but think I got all the exposure as a kid. I also have always lived in Southern CA.
I have never taken Hydrea, but have had four small basal cell carcinoma skin cancers removed already! I am blonde blue eyed and spent time outside as a kid riding horses and swimming all summer long as we were off back then. I did wear a visor, but had the skin cancers on my shoulder, neck, tummy, and even one behind my ear. All were on my left side. I have worn sunscreen, a hat, and sunglasses since being adult but think I got all the exposure as a kid. I also have always lived in Southern CA.
Thanks so much @nohrt4me! I'm adding these questions to my list. If you think of anything else, please let me know.
I'm also inviting anyone else reading this to share:
-questions that you may like answers to,
-questions that you may have asked in the past and did not get a satisfactory answer to or none,
-or,questions that you thought to ask and have asked and did get an answer to.
I do have a question. I was just diagnosed with JAK2 ET. Platelets at 790 and will be starting HU and Baby Aspirin after my bone marrow test. I am considered high risk due to my age and symptoms. I am also going to need BCG or some type of localized chemo for non-muscular invasive bladder cancer soon. Has anyone had any experience with this? Along with my stage 3 kidney failure I am starting to feel just tad overwhelmed :/ Thanks for the tips already provided and I know this is a "left field" ask 🙂
I do have a question. I was just diagnosed with JAK2 ET. Platelets at 790 and will be starting HU and Baby Aspirin after my bone marrow test. I am considered high risk due to my age and symptoms. I am also going to need BCG or some type of localized chemo for non-muscular invasive bladder cancer soon. Has anyone had any experience with this? Along with my stage 3 kidney failure I am starting to feel just tad overwhelmed :/ Thanks for the tips already provided and I know this is a "left field" ask 🙂
I do have a question. I was just diagnosed with JAK2 ET. Platelets at 790 and will be starting HU and Baby Aspirin after my bone marrow test. I am considered high risk due to my age and symptoms. I am also going to need BCG or some type of localized chemo for non-muscular invasive bladder cancer soon. Has anyone had any experience with this? Along with my stage 3 kidney failure I am starting to feel just tad overwhelmed :/ Thanks for the tips already provided and I know this is a "left field" ask 🙂
I'm going to be honest, I would send all my healing efforts to the bladder cancer. Take the meds for the ET, because ET isn't life threatening if managed. Then put all your focus and energy to everything your urologic oncologist says. The ET can't be cured but the bladder cancer can. Sending healing prayers your way.
Cancer is never fair! But support makes all the difference on the journey! Thanks to the incredible group of sharing, caring people on this forum - we are not alone with our blood cancers. It's an amazing resource, and incredibly positive in its approach.
I have never taken Hydrea, but have had four small basal cell carcinoma skin cancers removed already! I am blonde blue eyed and spent time outside as a kid riding horses and swimming all summer long as we were off back then. I did wear a visor, but had the skin cancers on my shoulder, neck, tummy, and even one behind my ear. All were on my left side. I have worn sunscreen, a hat, and sunglasses since being adult but think I got all the exposure as a kid. I also have always lived in Southern CA.
Yes as mentioned in the comments
I take Anagrelide - also had multiple skin cancers on scalp.
Long term use of HU has been known to increase skin cancer risks
I'm not a doctor but to provide some input on your question. Hydroxyurea is a chemo oral pill. How I was told is that ET is a "good" blood cancer, because it can be controlled. This chemo oral pill can help control your platelets and keep them at a somewhat normal level. Any underlying issue you might have it will trigger your platelets and can go up, however taking Hydroxyurea it will keep fighting to control your PLT count.
My mother had been taking it for 3 years but over time it started giving her other symptoms that did not make her very happy to the point where she was not eating anymore, fatigue was extreme, 24/7 nausea, and she was just miserable. Also within a year, her bones started to be more fragile and now she is high risk osteoporosis. I think like any medication over time it can onset something else. But because my moms lost appetite, dropping weight, and barely able to get herself up we considered to switch to Jakafi.
I'm sure it's different for many, but this is why I keep close monitor on my mom and track symptoms, because doctors can only do so much. I think doctors should read this forums because patients can provide a better picture of the different symptoms medications cause.
I hope I shed some light into your question. I hope your journey with ET is smooth sailings and keep yourself active, but listen to your body. Be blessed
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Thanks for your reply. I have ET but no symptoms yet so only baby aspirin.
Have a good weekend
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1 ReactionI have never taken Hydrea, but have had four small basal cell carcinoma skin cancers removed already! I am blonde blue eyed and spent time outside as a kid riding horses and swimming all summer long as we were off back then. I did wear a visor, but had the skin cancers on my shoulder, neck, tummy, and even one behind my ear. All were on my left side. I have worn sunscreen, a hat, and sunglasses since being adult but think I got all the exposure as a kid. I also have always lived in Southern CA.
Glad you are vigilant. If your doc suggests HU at some point, do tell him about the skin cancer. He might recommend anagrelide instead.
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3 ReactionsI do have a question. I was just diagnosed with JAK2 ET. Platelets at 790 and will be starting HU and Baby Aspirin after my bone marrow test. I am considered high risk due to my age and symptoms. I am also going to need BCG or some type of localized chemo for non-muscular invasive bladder cancer soon. Has anyone had any experience with this? Along with my stage 3 kidney failure I am starting to feel just tad overwhelmed :/ Thanks for the tips already provided and I know this is a "left field" ask 🙂
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Like -
Helpful -
Hug
6 Reactionsghen, I'm so sorry for all you are going through.
Not fair!!!
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3 ReactionsI'm going to be honest, I would send all my healing efforts to the bladder cancer. Take the meds for the ET, because ET isn't life threatening if managed. Then put all your focus and energy to everything your urologic oncologist says. The ET can't be cured but the bladder cancer can. Sending healing prayers your way.
-
Like -
Helpful -
Hug
8 ReactionsCancer is never fair! But support makes all the difference on the journey! Thanks to the incredible group of sharing, caring people on this forum - we are not alone with our blood cancers. It's an amazing resource, and incredibly positive in its approach.
-
Like -
Helpful -
Hug
5 ReactionsYes as mentioned in the comments
I take Anagrelide - also had multiple skin cancers on scalp.
Long term use of HU has been known to increase skin cancer risks
Hello!
I'm not a doctor but to provide some input on your question. Hydroxyurea is a chemo oral pill. How I was told is that ET is a "good" blood cancer, because it can be controlled. This chemo oral pill can help control your platelets and keep them at a somewhat normal level. Any underlying issue you might have it will trigger your platelets and can go up, however taking Hydroxyurea it will keep fighting to control your PLT count.
My mother had been taking it for 3 years but over time it started giving her other symptoms that did not make her very happy to the point where she was not eating anymore, fatigue was extreme, 24/7 nausea, and she was just miserable. Also within a year, her bones started to be more fragile and now she is high risk osteoporosis. I think like any medication over time it can onset something else. But because my moms lost appetite, dropping weight, and barely able to get herself up we considered to switch to Jakafi.
I'm sure it's different for many, but this is why I keep close monitor on my mom and track symptoms, because doctors can only do so much. I think doctors should read this forums because patients can provide a better picture of the different symptoms medications cause.
I hope I shed some light into your question. I hope your journey with ET is smooth sailings and keep yourself active, but listen to your body. Be blessed
-
Like -
Helpful -
Hug
1 Reaction