this December will be my 10th anniversary of being on Tasigna. I was one sick puppy when I started the clinical trial while in a "make you comfortable" room at MD Anderson. I was one of the ones that Gleevec worked great on until I became resistant. They gave me the trial drug, called AMN107, along with some oral chemo. My white count went o nothing, my hemoglobin dropped to below 8, and my platelets also dropped. After about a month, it was determined that I needed a break from the drug and it was held for almost a month. It was at that time I was declared to be in blast. Permission was obtained to put me back on the drug and I started to get transfusions. Some days it would be red cells and some days it would be platelets. Within about two months everything had leveled off and I was regaining my strength. Dr. Kantarjian thanks God as do I. I did not know that I was knocking on death's door until a number of months later.
My schedule to see Dr Kantafjian is now once every 6 months. Those that were there during that time still know my name. There are times I pause and wonder why I made it and others in the trial did not. I do thank all of the donors of blood and platelets because I believe it made my chances of recovery so much better. Most of all I thank my care giver who has been with me for well over 34 years and who I have know since she was 16. Now if I could just get her to learn to play golf. Norm . . On Friday, September 5, 2014 7:16:03 AM UTC-5, [email protected] wrote: > > Hi Skip and great to hear from you. As you know, I have had many trials > and tribulations with my blood counts. In taking Tasigna, I had to have > those bags of platelets also. It wasn't so bad, they give you a little > private space with a tv and hook you up to stay all day. They will bring > you anything you want to eat if they have it, and encourage you to eat. > I actually fought my doctor at the time because I never wanted anyone's > blood, but he finally insisted when my hemo got too low. The only problem > I had was they hooked me up to glucose bag and I needed to go to the > bathroom a lot. So I had to trail down to the bathroom with all my hookups > in tack. > One time the nurse decided to speed up the blood transfer, and my blood > pressure shot up. She had to reduce it immediately. > I have developed a painful jaw pain and after some research I found out > that Sprycel can cause jaw pain, so I am wondering if I should go off of it > until I see my onc. Just another battle to go through. > Anyone on this list developed Jaw pain while on Sprycel? > I also found this on ponatinib. Blessings, > Jeanie<3 > > *[10-11-2013]* The U.S. Food and Drug Administration (FDA) is > investigating an increasing frequency of reports of serious and > life-threatening blood clots and severe narrowing of blood vessels > (arteries and veins) of patients taking the leukemia chemotherapy drug > Iclusig (ponatinib). > > Health care professionals should consider for each patient, whether the > benefits of Iclusig treatment are likely to exceed the risks of treatment. > > Patients taking Iclusig should seek immediate medical attention if they > experience symptoms suggesting a heart attack such as chest pain or > pressure, pain in their arms, back, neck or jaw, or shortness of breath; or > symptoms of a stroke such as numbness or weakness on one side of the body, > trouble talking, severe headache, or dizziness. > > Iclusig is a prescription medicine used to treat adults diagnosed with > chronic phase, accelerated phase, or blast phase chronic myeloid leukemia > (CML) or Philadelphia chromosome-positive (Ph+) acute lymphoblastic > leukemia (ALL), who are no longer benefiting from previous treatment or who > did not tolerate other treatment. > > At the time of Iclusig’s approval in December 2012, the drug label > contained information about the risks of blood clots in the *Boxed > Warning* and *Warnings and Precautions* sections. In clinical trials > conducted before approval, serious arterial blood clots occurred in 8 > percent of Iclusig-treated patients, and blood clots in the veins occurred > in 3 percent of Iclusig-treated patients. In the most recent clinical > trial data submitted by the manufacturer to FDA, at least 20 percent of all > participants treated with Iclusig have developed blood clots or narrowing > of blood vessels. > > Data from clinical trials and postmarket adverse event reports show that > serious adverse events have occurred in patients treated with Iclusig, > including heart attacks resulting in death, worsening coronary artery > disease, stroke, narrowing of large arteries of the brain, severe narrowing > of blood vessels in the extremities, and the need for urgent surgical > procedures to restore blood flow. Other problems occurring with the drug’s > use include congestive heart failure (CHF) and loss of blood flow to > extremities resulting in tissue death requiring amputation. Newly > identified serious adverse reactions have also been reported involving the > eyes, including decreased vision and clots in blood vessels of the eye. > These adver > > > In a message dated 9/4/2014 12:44:28 P.M. Eastern Daylight Time, > [email protected] <javascript:> writes: > > Hi Skip, > I was so touched by your message. Thank you for posting it. My husband > (the CML warrior) does not have that particular problem, but it will give > many other CMLers hope and peace of mind. You have been through so much > and yet you, like the old commercial for Timex watches, take a licking but > keep on ticking. So thankful for you and others on this site. Always in > my prayers.... > Joyce in IL > > > On Sep 4, 2014, at 8:10 AM, 'Skip Duffie' via CMLHope wrote: > > Hello all..... > just wanted to comment on low/high platelets. I have gone through the > whole range of platelets, from 0(zero) to 380,000. This week last Friday I > had 40 platelets and received a bag. I received my report today 3Sept2014 > and I was back down to critical ( in my lab critical is below 30\). In all > my 36 almost 37 years, I do not think the high or low platelets bothered > me, Thank G-d. I have a PCR abl test every three months and yes it it so > much better than BMA, I lost track of how many I have over this last year > or so without meds, a log reduction of 0.5, not sure if that is good or > bad. My RBC is down in the 90's which makes me a bit winded. I go twice a > week for infusions, once week for RBC if below 100, twice week for > platelets, I usually lose between 30 to 50 platelets over the weekend. I > wanted to share this with all of you, it is not the end of the world if you > have movement in your counts, just remind your ONC if your feeling sick. > If anyone is interested I would be willing to send one of my lab reports, > if it would ease your mind. Our bodies are strong and will try to fight > this CML, but you have to help it, try to get rid of stress, eat healthy, > any problems talk it over with friends and family, Marty has sound advice, > And remember this old fellow keep praying for all of us every day. > Skip D > 37 years this Dec > > > On Thursday, September 4, 2014 9:31:55 AM, ICANDOALLTTC via CMLHope < > [email protected] <javascript:>> wrote: > > > Thanks Marty, being positive is one of our healing factors, but > sometimes when we feel so bad and know we have to take our chemo every day, > our mind gets bogged down with our illness. Our ability to focus sometimes > gets a little blurry when we are in pain, but somehow we will get lifted up > again and be ready to fight one more day. I love the inscription on my g > grandfather's grave. It says, "He Fought The Brave Fight." So let us all > fight bravely each day, and uplift each other with words of love and > encouragement. > You are one of the bravest warriors I have ever known. > Blessings, > Jeanie<3 > > In a message dated 9/3/2014 8:37:01 A.M. Eastern Daylight Time, > [email protected] <javascript:> writes: > > Maria, good luck with your blood test. > > Here are some words to live by... > > EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF > CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN > YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET > (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. > WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF > MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING > INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU > THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. > EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE > BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE > SUCCESSFUL OUTCOME... > FOCUS... > Please look me up. Google Marty Gartenberg. Open CML hope then go to “The > Window” > > 18's > > Marty > > > On Wed, Sep 3, 2014 at 8:22 AM, Maria Cashion <[email protected] > <javascript:>> wrote: > > Thanks both of you, Richard and Marty for your concern!!! I am doing OK > and plan to have a CBC done in an hour or so. I will start back on my > Sprycel as soon as they draw the blood!!! > > Life is beautiful no matter what. As I look back, I know that I am lucky > and strong, and I wil never give up!!!!! > > Love you all!!! > > Maria > > > On Wed, Sep 3, 2014 at 6:14 AM, <[email protected] <javascript:>> > wrote: > > [email protected] > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics> > Google > Groups > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > [image: > https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview] > > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > > Topic digest > View all topics > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics> > > > - Digest for [email protected] - 3 updates in 1 topic - 3 > Updates > > Digest for [email protected] - 3 updates in 1 topic > <http://groups.google.com/group/cmlhope/t/a7cd50b6b2942e2a?utm_source=digest&utm_medium=email> > Maria Cashion <[email protected] <javascript:>>: Sep 02 10:24PM -0400 > > Hello everyone!!!! God bless you all!!! I have been out of touch for a > while. My situation is still complicated, but rather uneventfull. I went > to my appointment and my oncologist for the day told me that I might need > another bone marrow aspiration and biopsy soon. She was worried because my > platelets went down. The problem is that I have not been able to take my > sprycel steadily. I have skipped some days. Sprycel acts really strongly > on my platelet count, and I know this is what is happenning. Apparently, I > have an infection also running around my system. To make it more > interesting, I have been out of medication for a whole week due to > insurance red tape... > I will resume my Sprycel 70 mcg dose daily tomorrow after I do another CBC. > I have an appointment in two weeks... > > Well, please take care!!!! Love you!!!! > Blessings!!! :) > Maria > > > Richard H <[email protected] <javascript:>>: Sep 02 09:11PM -0700 > > Hope you receive good news after your CBC. My ONC has a lab in his office > and I have my results after about a 1/32 hour wait. I have Iron Deficient > Anemia that was found after I was diagnosised with CML. He doesn't like to > have a patient do a bone marrow biopsy because it is too painful. I was on > Gleevec for 5 + years and off for almost 6. In Oct. I will do the mutation > testing as I have something happening in my medical life. I have several > things can be causing my blood test to be out of sync, so we must do some > elinination testing to find what tand who should be the lead Dr. to manage > treatment. > > My favorite response to the question "How are you doing?". "I stood up > this morning looked around and said "Thank you God. Its going to be a > great day. I hope you are having one also." > Richard H. > > On Tuesday, September 2, 2014 9:24:59 PM UTC-5, Maria Cashion wrote: > Marty Gartenberg <[email protected] <javascript:>>: Sep 03 04:47AM -0400 > > Hi Richard and Maria, > > Richard, whenever we can get out of bed then it really is a good day. When > I was a young child my father taught me that every day is a good day unless > someone that we love dies. > > Maria, isn't it a shame that we all have to be dealing with insurance > companies that may denigh us some life saving medications? This is simply > unacceptable. I do hope that all of this will be worked out for you and > everyone else that this may be happening to. > > 18's, > > Marty > > > > > On Wed, Sep 3, 2014 at 12:11 AM, Richard H <[email protected] > <javascript:>> > wrote: > > Back to top > You received this digest because you're subscribed to updates for this > group. You can change your settings on the group membership page > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/join> > . > To unsubscribe from this group and stop receiving emails from it send an > email to mailto:[email protected] <javascript:>. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com/ > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected] <javascript:>. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com/ > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected] <javascript:>. > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com/ > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected] <javascript:>. > For more options, visit https://groups.google.com/d/optout. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected] <javascript:>. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected] <javascript:>. > For more options, visit https://groups.google.com/d/optout. > > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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