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Tue, Apr 23 3:43pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

A P.S. I quess: and I know there is probably no good/clear answer but one cannot help but wonder what effects on the body, (bones) etc the HYDREA has. I know that without it I would probably have worse consequences but I guess we will all have to wait and see what the long term effects of this chemo has on who and how many. That is one thing I think is beneficial about sharing on a place like this with many others who are experiencing same and possibly different things.

Tue, Apr 23 3:13pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Not sure if this is the place to write a follow up note. I have written before as ESPERANZA but the format for commenting is very unclear to me. SO if it needs to be placed somewhere else, please do so. I have been diagnosed with ET and positive JAK2 about 4 years ago (MAY2015). Here is the latest on what I have been going through.
It has been awhile since I commented here. I have been sick. My platelets have been higher than usual, since I have been on Hydrea (2 a day, 7 days a week) and they have been controlled until recently. So y Oncologist increased my dosage to 3 a day for the last 6 weeks. However, a strange thing happened. Back in January I had a bone marrow biopsy to see if my ET had possibly morphed into MYELOFIBROSIS and maybe it would explain the leg and hip pain I have had for almost a year. Well, it came back negative fo MYELOFIBROSIS but positive for MYELODYSPLASIA and some anemia. I was told I would have to start the VIDAZA injections 5 days a month for months or years possibly. I was approved by Medicare and scheduled for these treatments. A few days before they were to begin, I went back for blood work and my red and white cells were so improved that the Doctor postponed the injections fro 6 weeks. After 6 weeks, the MYELODYSPLASIA did not even show up in my blood work. I must give credit to GOD. I had prayed that HE take away at least one of my conditions, as I have quite a few. Well, even though I have had to increase the HYDREA, (platelets did finally come down to the 430,000's from the mid 600,000 where they were with the 2 HYDREA a day.
I spent a week in the hospital after that, since I had a terrible pain in my left shoulder blade all the way through to my chest. After waiting for it to calm down, it actually grew worse and after a visit to the ER they hospitalized me for a complete cardiac workup. Praise the Lord my heart was OK, no blood clots, no pneumonia, but after all that, all I could think of (I had had no falls or known injuries) was the VEST machine that my pulmonologist had sent and I had been using for about 6 weeks. I did not have the actual vest, but a wrap around. If anyone knows what this is, it is a machine that vibrates your chest and helps clear the secretions our of your lungs to avoid pneumonia and asthma exacerbation. Well, after the cardiologist sent me for x-rays of my ribs; sure enough, I had about a 2 week old fractured rib which was causing the pain. Now, I am on a waiting list for one of the other problems I have to be addressed which is a complete left hip replacement. So, I am praying my platelets stay stable, as well as everything else so I can have this surgery.
One of the concerns I have in the near future is that for this surgery I will have to be off of ALL aspirin and platelet medicines (HYDREA) for 7 days. Not sure how my platelets will react and will it affect my surgery and post surgery treatment?
I guess we will find out. My Oncologist has said I could hold one day of HYDREA and I have to tell her what the ORTHOPEDIC doctor says of holding all blood and platelet thinners for 7 days prior to surgery.
Oh, the complications that can arise when several things do wrong with these bodies.

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.