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Wed, Mar 20 12:57am · Chemo and liver enzymes in Blood Cancers & Disorders

@JustinMcClanahan So far the Hydrea has worked well, although I have had a few times when my platelets went up with no explanation and she mentioned in passing about another treatment that targets the platelets only (I don't remember her saying what it was) and then, of course, taking out all your blood, taking out platelets and putting your blood back. I know this has a name but I cannot remember off hand what it is.
Both other alternatives more expensive for sure.

Wed, Jan 30 8:16pm · Myelodysplastic syndrome (MDS) and skin itching in Blood Cancers & Disorders

@JustinMcClanahan I just got my report today from my bone marrow biopsy and to the doctor's and my surprise, besides the ET, I now have myelodysplastic syndrome, and anemia… not sure I yet understand it all. Have not started on the shots yet but will have an abdominal ultrasound, which was already scheduled and see the doctor on the 11th to proceed with treatments. Does not seem to explain my leg pain, but does explain my lack of energy and feeling bad. So, a little more compliction to my already fairly rare disorder. I have had quite a bit of itching. Not unmaneagable but annoying. So I would lkie to hear from ET patients as well as this new diagnosis which I was given today. Esperanzam

Sat, Jan 26 9:00pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

@carlavan I am on Hydrea, 2 times a day, 7 days a week. I do have stomach problems but not all the time and I do not think they are related to the Hydrea as it is not all the time and I have IBS (Irritable Bowel Syndrome) and have for more than 20 years, which I think is the cause of my stomach issues. I did experience heartburn when I started taking the hydrea 3 1/2 years ago and the doctor put me on forst, Olmeprazol and then last year changed it to Ranitidine, which is Zantac, twice a day. I only have stomach problems when I eat something which I shouldn't or when I have high levels of stress. I tak a lot of probiotics. The probiotics may help you, whatever the cause of your stomach problems are. I am currently eperiencing problems but am traveling and travel always seems to make it worse. There are more times than not tha my stomach is fine, if I am eating right, even though I am contiously taking the Hydrea, so I have not experienced the Hydrea being the cause of it. Hope you find relief.

Sat, Jan 26 8:51pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

@susanellis@I do know what you mean about connecting with others who have the same thing you do. It is not easily understood. Most know I have Thrombocythemia but since I have had some complications and changes, when they found out I am actually on chemo and it is cancer, they are shocked. I have had very little if any side effects from the Hydrea for 3 1/2 years. I am thankful. Thanks for the best wishes. I do have lung problems and other things but we are trying to figure out what is what and if the ET has changed and treatment needs to changed. Sometimes it is hard to sort it all out, especially for doctors who do not specialize in these conditions. I should have the results from the bone marrow biopsy which I had this past Tuesday in 2- 2 1/2 weeks. Maybe this will provide some answers for my newest problems.

Thu, Jan 24 7:51am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

@Susan Ellis I take 2 Hydrea a day every day. Up until recently it kept them between 350,000 and 400,000. Recently they have gone up with no changes in dosage. Had a bone marrow biopsy 2 days ago (no results yet) to see it there have been any changes in disease (ET) with JAK-2

Sat, Jan 5 1:11am · Essential Thrombocythemia in Blood Cancers & Disorders

I forgot to mention that my Bone Marrow did show JAK2 mutation back in 2015. I do have sore in my mouth almost continously but not sure if they are from Hydrea or my asthma meds (I rinse mouth always after using inhalers) so I feel they are from the Hydrea, but are tolerable as I know side effects of some chemo are much worse.

Fri, Jan 4 9:09pm · Essential Thrombocythemia in Blood Cancers & Disorders

I can identify with your statement of feeling like your a doctor's nightmare. I was diagnosed with MAC, which is a non-infectious lung disease, and I have had asthma, and multiple lung issues for years. So I have at least two rare disorders. 🙁 Up till now, I have not had any problem with the Hydroxyurea except for heartburn. I take Zantac for that. Also 3 medications for the asthma. Recently had a flare up of the lung congestion/asthma after my platelets and white blood cells have been pretty altered. Guess my immune system is affected. I was 64 when diagnosed. 68 at present. Been battling with leg and calf pain… sometimes it feels like my bones are hurting. For 6 months I have done everything they have suggested and still having pain.

Fri, Jan 4 8:42pm · Essential Thrombocythemia in Blood Cancers & Disorders

Thanks. I am new to this and definitely want to see the amin discussion so you may point me in the right direction anytime. The main changes are that either the Hydrea is not working as it use to OR he fact that I have had leg pain for about 6 mos. Originally, we thought it was sciatic problems and my PC doctor sent me to Physical Rehab for 2 months. The Physical Therapists told me I should go back to my doctor and see what else was going on. So, I was sent to a pain specialist. Limited results and for a very short time. He referred me to an orthopedic doctor. I have had some steroid shots and my oncologist thinks that is what has driven my platelets back up to a dangerous level. She has not changed y dosage of Hydrea yet but I go back the 14th for more lab work. I have been reading more about ET ad find that my leg pain COULD BE from the ET, possibly morphing into Myelofibrosis. I was walking 2 miles a day months ago and suddenly my legs were just hurting and I was unable to walk long distances. I am on a walker now, and am really frustrated because no one has really been able to tell me why I have leg pain, all the way from hip to toes. I do have MILD arthritis, for which I recieved a steroid shot. Some success. But still a lot of leg pain. I am looking for answers. I do not merely want to cover up the pain, at least not until I find out why I am hurting so much.