Now dealing with leukemia

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  • survivingsu
    survivingsu Member Posts: 134 Member
    #22
    Get to go home today after transfusion and iv antibiotics

    Hi everyone,

    Thank you so much for your very supportive emails!  I have high risk mds mds leukemia.   The damage from my previous cancer treatments made the 5 th chromosome of my bad cells faulty.  Some one in this email thread asked about a certain drug, I'm not familiar with it.  I do know today I have to decide whether to take a clinical trials drug sorafenib that may help rid the faulty genetic cells but has horrible potential side effects like heart and other organ damage.  Having to make these kind of decions in the weakened state I am in is quite intimidating!

    Hanging in there!!!!

    Susan

     

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #23
    survivingsu said:

    Get to go home today after transfusion and iv antibiotics

    Hi everyone,

    Thank you so much for your very supportive emails!  I have high risk mds mds leukemia.   The damage from my previous cancer treatments made the 5 th chromosome of my bad cells faulty.  Some one in this email thread asked about a certain drug, I'm not familiar with it.  I do know today I have to decide whether to take a clinical trials drug sorafenib that may help rid the faulty genetic cells but has horrible potential side effects like heart and other organ damage.  Having to make these kind of decions in the weakened state I am in is quite intimidating!

    Hanging in there!!!!

    Susan

     

    I'm sorry to hear that it's

    I'm sorry to hear that it's so difficult. I obviously don't have any info on your situation . But you're in my thoughts as you make hard decisions. Adding my hopes in case you're short a full quota of hope on your own right now :)

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    edited June 2018 #24
    I'm sorry, Su. When I was

    I'm sorry, Su. When I was found to be really allergic to Taxol the doctor switched me to adriamyacin and carboplatin. Adriamyacin can cause heart disease, even years later. It scared me, especially since the one person I knew at the time who had chemo had adriamyacin, and it caused heart disease. I'm fine, at least so far. It scared me to death but it was the best option. Having to make these types of decisions are so hard.

  • janaes
    janaes Member Posts: 799 Member
    #25
    barnyardgal said:

    I'm sorry, Su. When I was

    I'm sorry, Su. When I was found to be really allergic to Taxol the doctor switched me to adriamyacin and carboplatin. Adriamyacin can cause heart disease, even years later. It scared me, especially since the one person I knew at the time who had chemo had adriamyacin, and it caused heart disease. I'm fine, at least so far. It scared me to death but it was the best option. Having to make these types of decisions are so hard.

    Im sorry you have to make

    Im sorry you have to make such hard desisions. Its so hard to have to weigh options that can effect your health either way. I had to choose between no more external radiation which ussually was used for my uterine cancer, and just doing bracytherapy. I chose bracytherapy because i didnt want more radiation to cause cancer again.  Who knows if my cancer will come back because i didnt do external radiation but i will tell you i thought about it and made the desision, of course with the help of my doctors, and it was the most logical desision. The one i felt the best about. Im confident you will do what is right for you

    Janae

  • Armywife
    Armywife Member Posts: 451 Member
    #26
    survivingsu said:

    Thanks everyone!

    Thank you for all the inspiring good wishes!  That definitely helps -i know I'm not alone.  Here's a few answers to some questions re my past cancer treatments...I went through chemo and radiation from July 2009 to October 2009, then surgery, then follow-up chemo.   I also had lots of ct scans, 1pet scan, and the CT scans post-treatment diminished over time, first every few months, then every 6, months, then yearly, then none unless a symptom arose to merit one.  Facing another completely different cancer is pretty intimidating, and like my first cancer, this one is also quite aggressive and deadly.  But I'm a tough old bird with good medical experts in a time and location where new technology is in my favor.  So I will really try to beat this cancer too.  

    Cheers,

    Susan

    Love

    Love that can-do spirit!

  • Armywife
    Armywife Member Posts: 451 Member
    #27
    survivingsu said:

    Get to go home today after transfusion and iv antibiotics

    Hi everyone,

    Thank you so much for your very supportive emails!  I have high risk mds mds leukemia.   The damage from my previous cancer treatments made the 5 th chromosome of my bad cells faulty.  Some one in this email thread asked about a certain drug, I'm not familiar with it.  I do know today I have to decide whether to take a clinical trials drug sorafenib that may help rid the faulty genetic cells but has horrible potential side effects like heart and other organ damage.  Having to make these kind of decions in the weakened state I am in is quite intimidating!

    Hanging in there!!!!

    Susan

     

    What did you decide?

    What did you decide about the clinical trial?

  • survivingsu
    survivingsu Member Posts: 134 Member
    #28
    Doing more chemo

    Hi buddies,

    Well I was hoping to be all set to begin getting prepared for my stem cell transplant possibility, my numbers had improved and I met with my doctor Monday.  Unfortunately while my blood counts had improved since my first chemo series in May/June, I still have the bad "blasts' cells, too many to qualify for the transplant right now.  And the transplant is the only way I can get cured from my high risk MDS leukemia.  So I'm back in the hospital getting another 5 day series of chemo.  It's going well so far!  Unlike the first time, my numbers are better and I do not feel sick, so this is a good start.  I will be getting day 3 chemo tonight, so I'm halfway to getting home if everything goes as planned.  Then it's recooperation time with multiple outpatient appts and transfusions.  I'm hoping this will get me closer to the transplant option.

    So I am definitely hanging in there!  I hate this very long treatment disease, and all the worries associated with it - financial, job, family, pets, future, etc., But this only motivates me more to do everything I can to get better and back to my life.

    Onward!

    Susan

  • janaes
    janaes Member Posts: 799 Member
    #29
    Ive been thinking about you.

    Ive been thinking about you. Im glad to hear your update. You have such a good attitude. Im glad to here your not getting sick this time and hope it continues to go that way. I hope they find a trasplant for you.

    Janae

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #30
    Susan, I am going to pray the

    Susan, I am going to pray the chemo "blasts the blasts".  When you have the strength, please let us know how you are doing.  Prayers for all the warriors

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #31
    NoTimeForCancer said:

    Susan, I am going to pray the

    Susan, I am going to pray the chemo "blasts the blasts".  When you have the strength, please let us know how you are doing.  Prayers for all the warriors

    Yes, blast the blasted blasts

    Yes, blast the blasted blasts! Thanks for checking in, I think of you. It's so unfair, but you're amazing.

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #32
    survivingsu said:

    Doing more chemo

    Hi buddies,

    Well I was hoping to be all set to begin getting prepared for my stem cell transplant possibility, my numbers had improved and I met with my doctor Monday.  Unfortunately while my blood counts had improved since my first chemo series in May/June, I still have the bad "blasts' cells, too many to qualify for the transplant right now.  And the transplant is the only way I can get cured from my high risk MDS leukemia.  So I'm back in the hospital getting another 5 day series of chemo.  It's going well so far!  Unlike the first time, my numbers are better and I do not feel sick, so this is a good start.  I will be getting day 3 chemo tonight, so I'm halfway to getting home if everything goes as planned.  Then it's recooperation time with multiple outpatient appts and transfusions.  I'm hoping this will get me closer to the transplant option.

    So I am definitely hanging in there!  I hate this very long treatment disease, and all the worries associated with it - financial, job, family, pets, future, etc., But this only motivates me more to do everything I can to get better and back to my life.

    Onward!

    Susan

    Moving on with treatments
    Susan, I admire your positivity! Thank you for your update. Keeping you in my prayers for completing the chemo and getting the transplant.
    Lori
  • Soup52
    Soup52 Member Posts: 908 Member
    #33
    Prayers!

    Prayers!

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #34
    Susan, I’m rooting for you!

    Your positive attitude is refreshing and I think will help you through this new trial. I sure wish, though, that you are not facing this situation. I remember my gyn onc telling me almost 5 years ago that my chance of developing a different kind of cancer increased, due to having a previous cancer (Uterine). Bad genes, I guess! My Dad was almost 98 years old when he passed on, likely due to a blood clot. When he passed, he had lymphoma. However, that was one of 5 different cancers he had in his adult life! He also had and was treated for: prostate cancer, urinary bladder cancer, basil cell carcinoma and squamous cell carcinoma. In spite of all that he lived a fantastic, wonderful life. Never ever give up hope! 

    Hugs,

    Cathy

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