Health Issue for HubbyDearest

m_azingrace
m_azingrace Member Posts: 399
edited March 2014 in Breast Cancer #1
HubbyDearest saw an orthopaedist because of pain in his right shoulder. The MRI shows torn rotator cuff. The surgeon ordered blood tests and the results showed high platelets, but also odd shapes. His potassium levels were high too. So he had to see a hematologist. That doctor did a bone marrow biopsy. We saw the doctor for the results, and the news is not good. He has Essential Thrombocythemia, and early stage Myelofibrosis. On March 15th he will meet with the same oncologist I see for the breast cancer. We'll find out at that time what other tests he might need to further define the disease, and also what treatment options there are.

I posted in the bone cancer discussion board, and in the rare cancer discussion board in hope of hearing from others with similar diagnosis. So far, no one has responded.

Does anyone here know of this disease? I've found very little about it online so far.

Thanks in advance for your help and support. God Bless. Gracie
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Comments

  • lynn1950
    lynn1950 Member Posts: 2,570
    #2
    Hello Gracie, I don't have
    Hello Gracie, I don't have any answers for you; just want you to know that you have my support. My prayers go out to you and your husband. xoxoxoxo Lynn
  • ppurdin
    ppurdin Member Posts: 1,181
    #3
    Hi Gracie
    I am sorry your husband is going through this.I went in on the other Cancer board before and didn,t get an answer either.We are used to this sight that someone always writtes back.You and your husband are in my Prayers.Good Luck and God Bless. Pat.
  • kms3566
    kms3566 Member Posts: 57
    #4
    Hello Gracie
    I don't know anything about the situation your husband and you are facing, but just wanted to let you know you are in my prayers and I am wishing you all the best.
    Karen
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #5
    So sorry
    to hear about that,Gracie.Glad that they found out so they can treat it,but that is very tough news and right after you trying to be on the mend..
    I havn't heard of the disease,but hopefully someone else on here has and can help you..
    Keep us posted-we do care,and we are here for you!
    I think that that is something we all worry about that our loved ones will also have to face the beastly disease..
  • carkris
    carkris Member Posts: 4,553 Member
    #6
    outdoorgirl said:

    So sorry
    to hear about that,Gracie.Glad that they found out so they can treat it,but that is very tough news and right after you trying to be on the mend..
    I havn't heard of the disease,but hopefully someone else on here has and can help you..
    Keep us posted-we do care,and we are here for you!
    I think that that is something we all worry about that our loved ones will also have to face the beastly disease..

    i am sorry i dont know
    i am sorry i dont know either. anybody have any sites that are helpful. wanted to wish you good luck. and to know we are thinking of you
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #7
    Gracie, unfortunately, I
    Gracie, unfortunately, I don't have any information for your either but wanted you to know that I'm sorry to read this. It is difficult enough for a family to go through one member in treatment much less two. We'll be here to help you through this. Please continue to post and let us know what's happening. You are one of my bc sisters and I'm here. Good luck!!
  • m_azingrace
    m_azingrace Member Posts: 399
    #8
    carkris said:

    i am sorry i dont know
    i am sorry i dont know either. anybody have any sites that are helpful. wanted to wish you good luck. and to know we are thinking of you

    Thanks
    Thank you to everyone who has replied. From what I can find out, this is an uncommon condition, affecting only about 2 people in 100,000. It's often not found until symptoms occur, and even then it may not be diagnosed right away. We are fortunate that the blood tests for his shoulder shoulder revealed a problem, so the disease can be attacked very early. Thanks again to you all. God Bless. Gracie
  • natly15
    natly15 Member Posts: 1,941
    #9
    Gracie I have no knowledge
    Gracie I have no knowledge of your husbands diagnosis, but want you to know my prayers are with you and your husband. May God bless both of you.
  • fauxma
    fauxma Member Posts: 3,577 Member
    #10
    natly15 said:

    Gracie I have no knowledge
    Gracie I have no knowledge of your husbands diagnosis, but want you to know my prayers are with you and your husband. May God bless both of you.

    Grace
    My prayers and good
    Grace
    My prayers and good thoughts are with you. I am so sorry that you and he are going through all of this.
    Stef
  • New Flower
    New Flower Member Posts: 4,294
    #11
    fauxma said:

    Grace
    My prayers and good
    Grace
    My prayers and good thoughts are with you. I am so sorry that you and he are going through all of this.
    Stef

    Grace sorry
    My heart goes out to you. It is tough to handle but you can do it. I think you can find some info on www.mayoclinic.com/health/myelofibrosis/ds00886. Have you checked Myeloma board at CSN?
    Please keep posted we will support you and pray for your family.
    Hugs,
    New Flower
  • m_azingrace
    m_azingrace Member Posts: 399
    #12
    New Flower said:

    Grace sorry
    My heart goes out to you. It is tough to handle but you can do it. I think you can find some info on www.mayoclinic.com/health/myelofibrosis/ds00886. Have you checked Myeloma board at CSN?
    Please keep posted we will support you and pray for your family.
    Hugs,
    New Flower

    Thanks
    Yes, New Flower, I had gone to the Mayo Clinic site a few days ago, and found that they have the most useful information so far. I checked out the Myeloma board at CSN too. Not much there for hubby at this point. The diagnosis report we got indicates platelet involvement, but no plasma problem. Further testing may reveal something more. Thanks for your help.
  • dash4
    dash4 Member Posts: 303 Member
    #13
    adding to prayers..
    My heart goes out to you...I don't know about your husband's diagnosis. I too have been on other boards here..the colon cancer board is very active, but many of the others you just don't get a reply from. I just wanted you to know I will keep you in my prayers and thoughts.
    mk
  • m_azingrace
    m_azingrace Member Posts: 399
    #14
    dash4 said:

    adding to prayers..
    My heart goes out to you...I don't know about your husband's diagnosis. I too have been on other boards here..the colon cancer board is very active, but many of the others you just don't get a reply from. I just wanted you to know I will keep you in my prayers and thoughts.
    mk

    Update on HubbyDearest
    First, thanks to you all for your interest and support. It means so much to me!

    Hubby and I met with the oncologist/hemotologist on the 15th of March ("beware the Ides of March"), and that went well. After reviewing the reports and Bill's history, it was decided that his platelets were not quite high enough for treatment, and he advised just monitoring until/if they started to rise. He was very thorough. We were there with him for more than an hour.

    We had barely gotten away from there when we received a call that Dr. wanted to see him again the next day. After conferring with several of his colleagues, the consensus was that given hubby's risk factors (age, high count, possible history of blood clot), it would be better to err on the side of caution and start treatment right away. We didn't have an appointment, but they worked us in when we arrived there on the 16th.

    Doctor went over a lot of the same information he had discussed the day before, and asked a few more questions. He explained the purpose of the drug he was prescribing, and said that he needed to see Bill every several days for blood work, to determine how effectively the med is working.

    The doctor had conservatively prescribed half the dosage he thought might be right. If the platelets drop too rapidly, there's a risk to that also. Yesterday, after the blood work, the dosage was increased. Bill goes back for another blood test Monday.

    Essential Thrombocythemia is a condition where the platelets reproduce much more rapidly than they die off, causing the blood to thicken and if untreated can lead to blood clots and/or stroke. The drug is supposed to kill off the excess cells. However, he has to be monitored to be sure there's a balance. Low platelet count is bad too.

    In addition to the ET, Hubby also has Myelofibrosis. The two are related, although I'm not clear which one caused the other. The myelofibrosis is a bone marrow disease where fibers develop instead of producing healthy marrow to support healthy blood. Right now he's not at great risk in that department, and doctor said he could continue to do well for many years, and at this stage there is nothing to be done.

    HubbyDearest is actually fine, with no signs of illness. The blessing in this is that it was found very early on, and the medicines should help him maintain his active lifestyle for a good long time.

    Thank you all for your prayers and responses. You are a constant source strength and inspiration to me. Hugs to you all. Gracie
  • Sunrae
    Sunrae Member Posts: 808
    #15
    m_azingrace said:

    Update on HubbyDearest
    First, thanks to you all for your interest and support. It means so much to me!

    Hubby and I met with the oncologist/hemotologist on the 15th of March ("beware the Ides of March"), and that went well. After reviewing the reports and Bill's history, it was decided that his platelets were not quite high enough for treatment, and he advised just monitoring until/if they started to rise. He was very thorough. We were there with him for more than an hour.

    We had barely gotten away from there when we received a call that Dr. wanted to see him again the next day. After conferring with several of his colleagues, the consensus was that given hubby's risk factors (age, high count, possible history of blood clot), it would be better to err on the side of caution and start treatment right away. We didn't have an appointment, but they worked us in when we arrived there on the 16th.

    Doctor went over a lot of the same information he had discussed the day before, and asked a few more questions. He explained the purpose of the drug he was prescribing, and said that he needed to see Bill every several days for blood work, to determine how effectively the med is working.

    The doctor had conservatively prescribed half the dosage he thought might be right. If the platelets drop too rapidly, there's a risk to that also. Yesterday, after the blood work, the dosage was increased. Bill goes back for another blood test Monday.

    Essential Thrombocythemia is a condition where the platelets reproduce much more rapidly than they die off, causing the blood to thicken and if untreated can lead to blood clots and/or stroke. The drug is supposed to kill off the excess cells. However, he has to be monitored to be sure there's a balance. Low platelet count is bad too.

    In addition to the ET, Hubby also has Myelofibrosis. The two are related, although I'm not clear which one caused the other. The myelofibrosis is a bone marrow disease where fibers develop instead of producing healthy marrow to support healthy blood. Right now he's not at great risk in that department, and doctor said he could continue to do well for many years, and at this stage there is nothing to be done.

    HubbyDearest is actually fine, with no signs of illness. The blessing in this is that it was found very early on, and the medicines should help him maintain his active lifestyle for a good long time.

    Thank you all for your prayers and responses. You are a constant source strength and inspiration to me. Hugs to you all. Gracie

    Hi Gracie, I saw your post
    Hi Gracie, I saw your post quite late and just wanted to let you know that you and your husband are in my prayers. Glad to hear that the drs. are on top of this situation and are taking cautionary steps in dealing with this. Like you said, its been found early and sounds like your husband can still enjoy his lifestyle. Take care of yourselves and keep us posted. You've always been so inspiring to the rest of us and we love to hear from you.
  • canoegirl
    canoegirl Member Posts: 169
    #16
    m_azingrace said:

    Update on HubbyDearest
    First, thanks to you all for your interest and support. It means so much to me!

    Hubby and I met with the oncologist/hemotologist on the 15th of March ("beware the Ides of March"), and that went well. After reviewing the reports and Bill's history, it was decided that his platelets were not quite high enough for treatment, and he advised just monitoring until/if they started to rise. He was very thorough. We were there with him for more than an hour.

    We had barely gotten away from there when we received a call that Dr. wanted to see him again the next day. After conferring with several of his colleagues, the consensus was that given hubby's risk factors (age, high count, possible history of blood clot), it would be better to err on the side of caution and start treatment right away. We didn't have an appointment, but they worked us in when we arrived there on the 16th.

    Doctor went over a lot of the same information he had discussed the day before, and asked a few more questions. He explained the purpose of the drug he was prescribing, and said that he needed to see Bill every several days for blood work, to determine how effectively the med is working.

    The doctor had conservatively prescribed half the dosage he thought might be right. If the platelets drop too rapidly, there's a risk to that also. Yesterday, after the blood work, the dosage was increased. Bill goes back for another blood test Monday.

    Essential Thrombocythemia is a condition where the platelets reproduce much more rapidly than they die off, causing the blood to thicken and if untreated can lead to blood clots and/or stroke. The drug is supposed to kill off the excess cells. However, he has to be monitored to be sure there's a balance. Low platelet count is bad too.

    In addition to the ET, Hubby also has Myelofibrosis. The two are related, although I'm not clear which one caused the other. The myelofibrosis is a bone marrow disease where fibers develop instead of producing healthy marrow to support healthy blood. Right now he's not at great risk in that department, and doctor said he could continue to do well for many years, and at this stage there is nothing to be done.

    HubbyDearest is actually fine, with no signs of illness. The blessing in this is that it was found very early on, and the medicines should help him maintain his active lifestyle for a good long time.

    Thank you all for your prayers and responses. You are a constant source strength and inspiration to me. Hugs to you all. Gracie

    Adding Prayers
    Gracie, Just saw your post today. Glad that it was found early and that he is getting appropriate treatment. I will add you both to my prayers. Good luck!

    Hugs,
    Marcy
  • fauxma
    fauxma Member Posts: 3,577 Member
    #17
    canoegirl said:

    Adding Prayers
    Gracie, Just saw your post today. Glad that it was found early and that he is getting appropriate treatment. I will add you both to my prayers. Good luck!

    Hugs,
    Marcy

    Gracie
    So glad this was
    Gracie
    So glad this was caught early and he is under his doctor's watchful eyes. My prayers that he continues to progress positively.
    Stef
  • New Flower
    New Flower Member Posts: 4,294
    #18
    fauxma said:

    Gracie
    So glad this was
    Gracie
    So glad this was caught early and he is under his doctor's watchful eyes. My prayers that he continues to progress positively.
    Stef

    Gracie
    Thank you for the update. I am glad that he is good hands and you have a very thoughtful oncologist who is taking time t care for his patients.
    Sending positive thoughts to you and your husband,
    New Flower
  • m_azingrace
    m_azingrace Member Posts: 399
    #19
    New Flower said:

    Gracie
    Thank you for the update. I am glad that he is good hands and you have a very thoughtful oncologist who is taking time t care for his patients.
    Sending positive thoughts to you and your husband,
    New Flower

    Thanks for all the good wishes. When we heard that Bill would need to see an ocologist, we requested the same doctor that is monitoring my cancer. We are both very comfortable with him. Besides being knowlegable in both cancer and blood diseases, he makes exceptional efforts to try to reach his patients, even calling personally if he thinks it's important enough. He even provided his cell phone number. Not that we would call him for just any frivolous reason, but it's comforting to know that he is available if we do need him!
    When it seems that many doctors intentionally distance themselves from their patients, we feel really blessed to have found this one.

    Thanks again to everyone for your expressions of kindness, hope and caring. Hugs. Gracie
  • jnl
    jnl Member Posts: 3,869 Member
    #20
    natly15 said:

    Gracie I have no knowledge
    Gracie I have no knowledge of your husbands diagnosis, but want you to know my prayers are with you and your husband. May God bless both of you.

    My prayers are with you and
    My prayers are with you and your husband.

    Hugs, Leeza
  • jnl
    jnl Member Posts: 3,869 Member
    #21
    m_azingrace said:

    Thanks for all the good wishes. When we heard that Bill would need to see an ocologist, we requested the same doctor that is monitoring my cancer. We are both very comfortable with him. Besides being knowlegable in both cancer and blood diseases, he makes exceptional efforts to try to reach his patients, even calling personally if he thinks it's important enough. He even provided his cell phone number. Not that we would call him for just any frivolous reason, but it's comforting to know that he is available if we do need him!
    When it seems that many doctors intentionally distance themselves from their patients, we feel really blessed to have found this one.

    Thanks again to everyone for your expressions of kindness, hope and caring. Hugs. Gracie

    Thank you for updating us!
    Thank you for updating us! Praying for your husband and you!

    Hugs, Leeza

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