Myelofibrosis w/ JAK2 mutation

Posted by Bijou @bijou, Jul 13, 2011

I have recently been diagnosed and want to know people’s experiences. Has anyone been through a clinical trial? Taken hydroxyurea? Not done anything? Worked with vitamins, minerals and alternative healing modalities? My white count is over 30,000, and spleen enlarged. Was just diagnosed 4 weeks ago.
Please share.

Thank you.

Liked by Bijou, jfinlay

@wellness3070

Good luck at Mayo. Would really appreciate hearing about info. received at Mayo re.. Myelofibrosis. Important to me also. Thanks.

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I will definitely let you know.

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@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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Hello @susanvij,

Teresa, @hopeful33250 has provided some great information, and I would also encourage you to look at this recent article (Mayo Clinic New Network) about a new drug that has demonstrated potential value in treating patients with myelofibrosis: http://mayocl.in/1Ux3Hqq

You may wish to view this discussion in the Cancer group on Connect, too;
Myelofibrosis* http://mayocl.in/2n28k2Y

I also hope @jfinlay, @djr, @gouldh, @memy, @gael, @bjsdancer, @rcand10s, will return with some more insight for you to help your brother.

@susanvij, what symptoms does your brother have?

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@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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Thank you! He has all the symptoms except Splenomegaly. He already had two blood transfusions in two mouths period. He is very weak and recently experiencing fever. The Dr’s in Chicago said there are no drugs that will work on him since he has CALR mutation. The only option is bone marrow transplant. We have an appt coming up in march at Mayo. Hope they can give us some good news.

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@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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@susanvij We are all certainly wishing him well too! Teresa

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@hopeful33250

@susanvij Yes, please let us know how everything goes with your Mayo appointment. Is the appointment in March? Teresa

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Good luck on your Mayo visit.Only positive results !!!

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Just thought I’d check in.
@susanvij, How was your brother’s visit to Mayo in March?

@wellness3070, how are you doing?

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Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea Caplets now for over one year. These pills make him sick and really tired. He is a Plasterer by trade and hasn’t been able to work this whole past year. Also his body hurts all the time and the doc won’t give him any pain pills. As no work-no money=no insurance. He has lost his business as he couldn’t work the jobs. Round robin of problems. He takes the medicine after dinner and just goes to bed. Any Body out there who has had better luck???? One doc told him if he stopped the pills he would be dead in six months. (he doesn’t see that guy any more)……. His mom!

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@shortshot80

Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea Caplets now for over one year. These pills make him sick and really tired. He is a Plasterer by trade and hasn’t been able to work this whole past year. Also his body hurts all the time and the doc won’t give him any pain pills. As no work-no money=no insurance. He has lost his business as he couldn’t work the jobs. Round robin of problems. He takes the medicine after dinner and just goes to bed. Any Body out there who has had better luck???? One doc told him if he stopped the pills he would be dead in six months. (he doesn’t see that guy any more)……. His mom!

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When was his last blood test? Red platlet count ? White cell count? Where is pain located? Condition of spleen ?  Ruxolitinib is best medication for me and I have had myelifibrosis for past five years. Hydroxyurea stoped working for me

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@shortshot80

Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea Caplets now for over one year. These pills make him sick and really tired. He is a Plasterer by trade and hasn’t been able to work this whole past year. Also his body hurts all the time and the doc won’t give him any pain pills. As no work-no money=no insurance. He has lost his business as he couldn’t work the jobs. Round robin of problems. He takes the medicine after dinner and just goes to bed. Any Body out there who has had better luck???? One doc told him if he stopped the pills he would be dead in six months. (he doesn’t see that guy any more)……. His mom!

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He is supposed to see the doc in August. I think the blood test was three months ago. His whole body hurts. He is depressed a whole round robin of things. He had a friend that told him he heard on TV that “Radiation causes this. I don’t know his platelet count. He does not share a whole bunch with me as I have two kinds of lung cancer Meso in the left & plain cancer in the right. He doesn’t want me to worry. HA! I’m his mom, ME not worry! What is he thinking about?

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@shortshot80

Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea Caplets now for over one year. These pills make him sick and really tired. He is a Plasterer by trade and hasn’t been able to work this whole past year. Also his body hurts all the time and the doc won’t give him any pain pills. As no work-no money=no insurance. He has lost his business as he couldn’t work the jobs. Round robin of problems. He takes the medicine after dinner and just goes to bed. Any Body out there who has had better luck???? One doc told him if he stopped the pills he would be dead in six months. (he doesn’t see that guy any more)……. His mom!

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I am so sorry to hear if your serious health issues for you and your son !
No one should have pain . Can your son be more assertive in getting support for pain management through his dr ? He may need to have medical attention before August .

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@shortshot80

Hello, My son will be 62 in August and he has been taking the drug Hydroxyurea Caplets now for over one year. These pills make him sick and really tired. He is a Plasterer by trade and hasn’t been able to work this whole past year. Also his body hurts all the time and the doc won’t give him any pain pills. As no work-no money=no insurance. He has lost his business as he couldn’t work the jobs. Round robin of problems. He takes the medicine after dinner and just goes to bed. Any Body out there who has had better luck???? One doc told him if he stopped the pills he would be dead in six months. (he doesn’t see that guy any more)……. His mom!

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He has asked & asked his doc for pain pill. Doc tells him this medicine should not hurt and refuses to give him any. After he has had to quit and de-solve his business he doesn’t have any insurance to go get another doc. Round robin of BS.. that is the # 3 son above. #2 son’s first wife died of Melnomah and second wife has lung cancer…..Then I tell him that I have two kinds lung cancer. Husband has had several different cancers/lymphnomah,…..Sorry very tired and can’t seem to spell tonite. please forgive. (shortshot80)

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You and your family are certainly experiencing such difficult health situations . Is your son eligible for Medicade? Does your state have low income health plans ? I hope he can find a resolution to his pain . There are alternatives to medication .

Liked by shortshot80

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@gael

You and your family are certainly experiencing such difficult health situations . Is your son eligible for Medicade? Does your state have low income health plans ? I hope he can find a resolution to his pain . There are alternatives to medication .

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He will be 62 in August. What alternatives are you talking about for his pain? He has the lowest health plan he can afford. He has applied for SS disability, hopefully he will hear soon. One of his friends told him that he heard on TV that this disease could be from radiation. He is going to check that out. I’m a mom and I worry about him, also my daughter in law who has lung cancer which has spread to her lymph nodes. Hopefully something will work to fight the various cancers that I and my family have. Prayers for all of us, Please. (shortshot80)

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Meditation, natural endorphins from exercise, no alcohol or cut back, no smoking or cut back , support group , track pain level , biofeedback, massage , medical marijuana . Hope some ideas can be of help. Best wishes .

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@gael

You and your family are certainly experiencing such difficult health situations . Is your son eligible for Medicade? Does your state have low income health plans ? I hope he can find a resolution to his pain . There are alternatives to medication .

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I forwarded your info on to my son, Thank you much! shortshot80

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