Haha skip, I can just see you walking down the hall just as I did. I had to do that several times, but I believe the doctor at the time could have just quit my meds for a few days. I finally quit him and started going to Moffitt Cancer Center. Great place. It's part of the University of South Florida. Get my blood done and then straight over to my Doctor, who is Dr Balducci, head of the senior oncology Center there. Have a wonderful Sunday! Blessings, Jeanie<3 In a message dated 9/6/2014 9:17:14 A.M. Eastern Daylight Time, [email protected] writes:
You sure have had your fill of problems I have been lucky .I k now of which you speak .on my pole I have bag of desferol a bag benadryl platelets and red cells and I have t drag all t hat washroom I have tp use spec bathroom as I have low immune system with we below 1.7 but I am well e nought tp do t his so I have no room t gripe skipd Sent from Yahoo Mail on And ____________________________________ From: ICANDOALLTTC via CMLHope <[email protected]>; To: <[email protected]>; Subject: [CMLHope] skip blood trasfusion jaw pain? pinatinib warning Sent: Fri, Sep 5, 2014 12:15:56 PM 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] 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:return) > 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:return) 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:return) > 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:return) > 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) (https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overvi ew) 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=e mail) Maria Cashion <[email protected]_ (javascript:return) >: 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:return) >: 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:return) >: 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:return) > 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/cmlho pe/join) . To unsubscribe from this group and stop receiving emails from it send an email to _mailto:cmlhope%[email protected]_ (javascript:return) . -- -- [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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