Monday, November 1, 2010

Some drama....

Well today was a weird day. I had my 18 month checkup and it went ok. While my counts remain stable, my genetic testing is not where he would like it at this point. So, we have decided to stop Gleevec and go onto a new, better medication called Sprycel. From all the reading, this is superior to Gleevec in many ways and will likely become the primary treatment for many patients soon. I am a bit apprehensive since I am now one step closer to the dreaded Bone Marrow Transplant, but still a long ways off. Chrissy did not handle the news well at first. Since I have read up on all these medications, I was aware that the new medication can cause a cardiac condition known as Long QT syndrome. When I brought that up to the doctor, she became upset. They ran an EKG to make sure I am not at risk, and I will start sometime this week!

5 comments:

  1. Well, you didn't really fail Gleevec, so I wouldn't consider a change in therapy one step closer to BM transplant.

    ReplyDelete
  2. I stumbled across your blog on Facebook and it is absolutely amazing. My 17 year old son was dignosed with CML in May 2010 and although his care at Cincinnati Children's is phenemonal and he is doing wonderfully on Gleevec, it is impossible to find any kind of support system because CML is so rare in teens and young adults like yourself. We will follow your blog and wish you continued good health on the Sprycel.

    ReplyDelete
  3. That is the right approach to medication which most of us forget.The treatment as decided by the doctor has to show improvements on you ...if not then you must learn to take another route soon enough.

    ReplyDelete
  4. MY NAME IS MARIAM FROM SOUTH AFRICA...I SAW THIS COMMENT ON POSITIVE BLOGS AND I WILL LOVE TO TELL EVERYBODY HOW MY STATUS CHANGES TO NEGATIVE, AND AM NOW A LIVING WITNESS OF IT AND I THINK ITS A SHAME ON ME IF I DON'T SHARE THIS LOVELY STORY WITH OTHER PEOPLE INFECTED WITH THIS DEADLY VIRUS...,HIV HAS BEEN ONGOING IN MY FAMILY... I LOST BOTH PARENTS TO HIV,. AND IT IS SO MUCH PAIN IVE NOT BEEN ABLE TO GET OVER.. AS WE ALL KNOW MEDICALLY THERE IS NO SOLUTION TO IT..AND MEDICATION IS VERY EXPENSIVE..SO SOMEONE INTRODUCED ME TO A NATIVE MEDICAL PRACTITIONER IN AFRICA..I HAD A JOB THERE TO EXECUTE SO I TOOK TIME TO CHECK OUT ON HIM.I SHOWED HIM ALL MY TESTS AND RESULTS.. I WAS ALREADY DIAGNOSED WITH HIV AND IT WAS ALREADY TAKING ITS TOWL ON ME.. I HAD SPENT THOUSANDS OF DOLLARS SO I DECIDED TO TRY HIM OUT...I WAS ON HIS DOSAGE FOR 1 MONTHS. ALTHOUGH I DIDNT BELIEVE IN IT, I WAS JUST TRYING IT OUT OF FRUSTRATION... AND AFTER 2 WEEKS, I WENT FOR NEW TESTS... AND YOU WONT BELIEVE THAT 5 DIFFERENT DOCTORS CONFIRMED IT THAT AM NEGATIVE..IT WAS LIKE A DREAM,,I NEVER BELIEVE AIDS HAS CURE..AM NOW NEGATIVE,,AM A LIVING WITNESS..I DONT KNOW HOW TO THANK THIS MAN... I JUST WANT TO HELP OTHERS IN ANY WAY I CAN..HAVE JOINED MANY FORUMS AND HAVE POSTED THIS TESTIMONIES AND ALOT OF PEOPLE HAS MAIL AND CALLED THIS MAN ON PHONE AND AFTER 2 WEEKS THEY ALL CONFIRMED NEGATIVE..BBC NEWS TOOK IT LIVE AND EVERY.. HOPE HE HELPS YOU OUT.. EVERYBODY SAW IT AND ITS NOW OUT IN PAPERS AND MAGAZINES THAT THERE'S NATIVE CURE FOR HIV AND ALL WITH THE HELP OF THIS MAN,,HAVE TRIED MY OWN PARTS AND ALL LEFT WITH YOU,,IF YOU LIKE TAKE IT OR NOT..GOD KNOWS HAVE TRIED MY BEST.ABOUT 97 PEOPLE HAVE BEEN CONFIRMED NEGATIVE THROUGH ME..AND THEY SEND MAILS TO THANKS ME AFTER THEY HAVE BEEN CONFIRMED NEGATIVE,,THIS MAN IS REAL..DON'T MISS THIS CHANCE,,HIV IS A DEADLY VIRUS,,GET RID OF IT NOW..
    case there is anyone who has similar problem and still

    looking for a way out, and he those cast all kind of spell like ::
    Love Spells
    Luck, Money Spells
    Health, Well Being
    Protection, Healing
    Curses, ex, Breakups
    NEW! Combo Spells
    High Priestess Spells
    Vampire Spells
    Authentic Voodoo Spells
    Custom, Other Spells
    Business spells
    Health/Healing spells
    Cancer healing
    Curse removal
    Job spells
    Healing from all kind of diseases
    Love binding
    Barrenness(need a child)
    Need love
    Lottery Spells
    Promotions
    Success
    Money rituals
    winning court case
    Divorce spells
    Low sperm count
    Infertility in women
    Breast enlargement/reduction
    Penis enlargement/reduction
    Diabetes
    Arthritis
    sicklecell
    YOU CAN CONTACT HIM HERE AS (dr.abalaka@outlook.com) and also his state based number text him here if you're in the US: 760-935-3804 if you need any question contact me via here as mariambaurice@gmail.com i wish you best of luck and good health.

    ReplyDelete
  5. It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through living with Herpes but once again, God is bigger than my stubbornness and broke through that outbreak cold sore and all I had Genital Herpes. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I was just waking up like is this how life going to end this temporary herpes outbreak “fuck everybody with herpes if you know what I mean” but let's be honest here...
    It is a cowardly to say no to herbal medicine. It is fear based. And it is dishonest to what my heart wants. Don't build a wall around yourself because you are afraid of herbals made or taking a bold step especially when it's come to health issues and getting cure. So many young men/ women tell me over and over that Dr Itua is going to scam me but I give him a try to today I feel like no one will ever convince me about herbal medicine I accept Dr Itua herbal medicine because it's cure my herpes just two weeks of drinking it and i have been living for a year and months now I experience outbreak no more, You can contact him if you need his herbal medicine for any such diseases like, Herpes, Hepatitis, HIV, Epilepsy, Infertility, Love Spell,. Email..drituaherbalcenter@gmail.com then what's app.+2348149277967.... My advice to any sick men/women out there is simple... Be Always an open book. Be gut wrenching honest about yourself, your situation, and what you are all about. Don't hold anything back. Holding back will get you nowhere...maybe a one way ticket to lonelyville and that is NOT somewhere you want to be. So my final truth...and I'm just starting to grasp this one..

    ReplyDelete