The Leukemia & Lymphoma Society - Fighting Blood Cancers
39 Replies Latest reply: May 7, 2012 11:57 PM by pammartin RSS

Sprycel Dosage

pammartin Registered Users
Currently Being Moderated

I have read many posts including the current ones about lowering dosage after a time, but I am confused about my situation.  I am experiencing good results, but I have developed angioedema around my eye area, some days it is pretty severe, others not so bad.  Also, today's labs are lower than they have been for a while. 

 

White count is 4.1 I realize not that low but lower than it has been since December,

red count is 3.1

platelets are holding at 210,000

all liver and kidney levels are good

forgot to ask about neut, my mistake

 

So, my question is, how long should someone wait before they consider reducing the level of Sprycel they are taking, six months PCR

 

87% October 2011

.004% January

less than .001% April

 

I do realize i will have to change doctors to even consider a reduction, my current doctors do not entertain any reduction less than 100mg unless life threatening conditions are occurring.  The trend is still to hit hard and fast, but I just read the current post about Gleevec and reduction and perhaps the idea is finally being considered to reduce after a period of time if response is positive.  I would appreciate any thoughts or opinions on where I might go from here or is it too soon to look at reduction.  I hate taking steroids, and that is what I am going to have to do for the edema, but because my labs are lower, thought I might investigate another route.

Thanks anyone/everyone in advance for thoughts and replies

Pam

  • Re: Sprycel Dosage
    pamsouth Registered Users
    Currently Being Moderated

    Hey PamM,

     

    I am not the expert here.  I think the choice of how low to let your counts go would vary from person to person, even the scholarly.  A lot would depend on if the patient has a lot of trust in doctors and if they would rather comply with their doctor, then the alternatives, which takes some risk, the way I look at it, you take a calculated risk either way.  Some patients would not want to do their own research and make that kind of decision, if it is agains their doctor.  It can be rather intimating to challenge your doctor and stressful to change doctor.   I often wonder from the old timers CML patients, if they would have done things differently, looking back.  Then again doctors can get very upset if you don’t comply or question them.  Then it gets scary as to finding a doc you can work with.  You know that doc is getting paid big bucks for all us cancer patients.  So are the drug companies.

     

    Me for one if I knew what i know now,  I would never have let my CBC counts, including my blood pressure which dropped down to 60/30, get that low again.  I mean they hit you hard then I had to go to the hospital for IV. I know they say, get rid of as many CML PH+,  so your healthy cells get a chance to recover while CML is slow.  But then I wonder about the things that can happen on low counts, it sort of a trade off.  I think most new  diagnosed are afraid to go against doctors orders, I know I was to a point.  But wasn’t long I was flying off to another cancer center.  Same goes for doctors, some go by guideline and others not so strict, but I think most docs like to stick to the guideline, or protocol, maybe that protects the doctor to say I went by NCCA guideline, or they are just more comfortable especially if they are not CML specialist or have had a lot of CML patients.  Then again I think that is the was onc are taught from years gone by hit the patient hard.  I think perhaps times have changed.

     

    I don’t have an answer for you as everyone is different. 

     

    Just Saying, do your homework, get lots of opinions for others and  the experts on the board. Then go by your instinct, cause your the only you, and the only one that has got to live, with right or wrong choices.  No one else in your exact shoes. Not that there is a perfect solution. At least not until they find the cure. Which at present is still the BMT.

     

    P.S. Just got back from dinner.  I was thinking I should clear things up a couple of things about flying off to another cancer center..  Back in 2005 and 200, I flew to MD Anderson Houston Tx.   I live in Indiana.    MD Anderson along with my local hospitals were have clinical trials of 400Mg vs 800 mg of Gleevec.  There wasn’t a whole lot of data on a lot of things back then. MD Anderson was also going by the national guidelines. 

     

    However I decided as my counts started to come back up, not to go on a higher dose, and risk getting low counts again.  I wanted to wait until there was more data, which I knew was a few years down the road.  Plus there was the quality of life issue for me.  That was another reason I didn’t want to change to a newer drug unless there was a need.  My onc had said better drugs out, but I knew that wasn’t always true for everyone, as it takes many years for studies and the longterm out come of patients. 

     

    So It was just a personal decision not to let my counts get so low, again.

     

    Prayers, PamSouth

    • Re: Sprycel Dosage
      pammartin Registered Users
      Currently Being Moderated

      Hi Pamsouth,

      I was way laid while reading your post, I have been having trouble with something tearing down my bird feeders, I looked out a bit ago and there is a small black bear happily eating the bird seed I just put out this evening about 8 p.m.  I will post photos in a bit, they are dark, but I think you can see the bear.

      Thank you for the reply I will read over it again after I calm down, that creature was about 20 feet from my patio door happily tearing apart my feeder and not worried about me taking photos of it! 

      • Re: Sprycel Dosage
        pamsouth Registered Users
        Currently Being Moderated

        pammartin wrote:

         

        Hi Pamsouth,

        I was way laid while reading your post, I have been having trouble with something tearing down my bird feeders, I looked out a bit ago and there is a small black bear happily eating the bird seed I just put out this evening about 8 p.m.  I will post photos in a bit, they are dark, but I think you can see the bear.

        Thank you for the reply I will read over it again after I calm down, that creature was about 20 feet from my patio door happily tearing apart my feeder and not worried about me taking photos of it! 

        PamM,

         

        It is 1am and I have a bit of sundowners/braindead, but did you day you had a bear about 20 feet from your patio door, yea the door with glass, and you are taking pictures.

         

        You said you were laying down, so maybe you are dreaming??

         

        Catch you tomorrow,  PamS

    • Re: Sprycel Dosage
      Judy2 Registered Users
      Currently Being Moderated

      Hi Pam South,

       

      You wrote that back in the year 200 you switched cancer centers. NO WONDER YOU ARE TIRED, YOU HAVE BEEN DEALING WITH CML FOR ONE THOUSAND EIGHT HUNDRED AND TWELVE YEARS!!!  I have to say, you look damn good considering.

       

      Hi Pam Martin,

       

      Talk to you later.

       

      xo,

      Judy

      • Re: Sprycel Dosage
        billronm@roadrunner.com Registered Users
        Currently Being Moderated

        Hi Judy,

          Are you feeling better? I hope so! We should make each other a promise that we'll walk to the corner every day!  Maybe that will get my dead a-- moving Lots o Luv Billie   If Pam wants to shovel b2 gravel she's on her own!

        • Re: Sprycel Dosage
          Judy2 Registered Users
          Currently Being Moderated

          Hi Billie,

           

          I'm feeling better. How are you doing? Are you adjusting to your bp medicine yet? Actually, I still don't have much energy but I guess I can live with it.

           

          I am with you, Pam is on her own when it comes to shoveling gravel. I wouldn't mind seeing a picture of her in action, though.

           

          xo,

          Judy

        • Re: Sprycel Dosage
          pammartin Registered Users
          Currently Being Moderated

          Billie I shoveled that damn stone again yesterday and still only made a dent!  it goes on forever......

      • Re: Sprycel Dosage
        pamsouth Registered Users
        Currently Being Moderated

        Judy2,

         

        I LOVE IT, I LOVE IT.  You are absolutely right “I LOOK DAM GOOD as I HAVE BEEN DEALING WITH CML FOR ONE THOUSAND EIGHT HUNDRED AND TWELVE YEARS!!  It was them dam TKI I have been b.... about.  Sorry about the language, but I have lost my religion.

         

        Love You!!  Still Laughing!  What could be any better then laughing about living with cml for over 1,000 years.....  Go figure....

         

        You are such a sweet one, to think of all these wonderful little endearments.

         

        Love PamSouth

        • Re: Sprycel Dosage
          Judy2 Registered Users
          Currently Being Moderated

          Hi Pam S.,

           

          I'm glad you enjoyed my reply, I couldn't stop laughing when I read what you wrote. You are right, it's nice to be able to laugh together.

           

          xo,

          Judy

           

          P.S. Please call me Judy, we really should be on a first name basis by now.

        • Re: Sprycel Dosage
          pammartin Registered Users
          Currently Being Moderated

          Judy, you are a riot!!!!!!  Pamsouth, although the topic is serious I love it when it goes to a funny, typos can sometimes be a great thing! 

  • Re: Sprycel Dosage
    hannibellemo Registered Users
    Currently Being Moderated

    PamM,

     

    Your counts are great; higher than mine and I've been on S for over 2 years. I think the idea  is to wait two years after reaching MMR before reducing your dosage. Do you take a diuretic for your edema? Dr. Druker recommends Dyazide because it is more potassium sparing. Just a suggestion.

     

    Pat

    • Re: Sprycel Dosage
      pammartin Registered Users
      Currently Being Moderated

      Thanks Pat,

      I was thinking of that also, the diuretic instead of the steroids, see what happens, I can always take the steroids if another option does not work.  I was going to wait to change docs until after the summer PCR but I think I will search before that.  I am not in distress, but if I were ever to be, then I would be searching for doc and dealing with whatever the problem was.  I did call both oncologist and hematologist, they stated the edema was not due to the Sprycel so call the PCP.  The PCP is fairly clueless, she is great, listens and tries to understand, but knows nothing of the interaction and what should or should not be taken, so she ends up calling the higher powers anyway.  I have thought about this and continue to argue with myself, but I should have a doctor I am comfortable with and one that I can look to for information if I have a question.  Thanks for the advice and reminding me my numbers are pretty good.  I think there is a part of me that would like to reduce the Sprycel dosage so I look for any reason I can.  Less dosage=less side effects.  I am in a hurry and have to slow down, need to fix what I can and deal with what I can't. I can fix the idea I need a doc I can rely on and ask questions too without waiting days or have no return call, can't change the suggested safe time frame before lowering dosage without a real medical reason. 

      • Re: Sprycel Dosage
        Headi Registered Users
        Currently Being Moderated

        PamM,  I know what you mean about an onc you can talk to. I've had that same problem for 3 years and finally got a recommendation from a hospital radiologist and made a change.  I'm so glad I finally did.  A dr. who will talk to you is worth 20 so called cancer geniuses. As far as the swelling goes, the suggestion of a diuretic is a good one. It should help as much as steroids and be safer.  Just be careful of your potassium and magnesium levels. I wasn't prescribed them along with the diuretic and my potassium level went too low and caused a heart problem.

        • Re: Sprycel Dosage
          pammartin Registered Users
          Currently Being Moderated

          oh crap, isn't it great we trade one effect for another and then just add a pill?  I hope you had a positive recovery from your journey with the diuretic.  I have taken them on and off over the years, doc always did a PRN for me, last year when my son and I went to Florida I thought my ankles would burst.  They were huge, but not one problem all last summer.  Water retention is difficult, there are many reasons for it to happen.  I will wait out these blased steroids, then hit the water pill.  I used to have labs drawn every week, but have went down to about 4 weeks now, I have had to take potassium and magnesium just a few months ago because they were low.  I still have those scripts also.  Nice to have my own little pharmacy going on  Thanks for the info Headi, appreciate the thoughts.

  • Re: Sprycel Dosage
    billronm@roadrunner.com Registered Users
    Currently Being Moderated

    Hi Pam, M,

       Everyone knows I don't understand the numbers, But when I had my bw done in Jan. my wbc was 4.5, the cc center just sent me some results from monday and my wbc is 8.0,In Jan. they automatically gave me my numbers,  I just had my bw done Mon. and the nurse called me Tuesday and said don't decrease my dosage. And have the same bw done May 30, there was no way they could have gotten my results in one day, so I told her to send me a copy when they get the rest of the results, they sent me some results today but not all of them, but I compared them to my results from Jan. and they look kind of scary to me. I'm not going to panic, I'm not going to panic,I'm not going to panic, because I'm an idiot when it comes to cml numbers, and computers, I'm a wreck which is why I stay away from these reports. Even my carbon dioxide numbers went up, I don't smoke, but these bp pills make me so tired I get worn out going to the mail box and sometimes I get out of breath. But I'm not going to panic!  I'm going to get a glass of wine instead,  Love Billie

    • Re: Sprycel Dosage
      pamsouth Registered Users
      Currently Being Moderated

      Billie Murawski wrote:

       

      Hi Pam, M,

         Everyone knows I don't understand the numbers, But when I had my bw done in Jan. my wbc was 4.5, the cc center just sent me some results from monday and my wbc is 8.0,In Jan. they automatically gave me my numbers,  I just had my bw done Mon. and the nurse called me Tuesday and said don't decrease my dosage. And have the same bw done May 30, there was no way they could have gotten my results in one day, so I told her to send me a copy when they get the rest of the results, they sent me some results today but not all of them, but I compared them to my results from Jan. and they look kind of scary to me. I'm not going to panic, I'm not going to panic,I'm not going to panic, because I'm an idiot when it comes to cml numbers, and computers, I'm a wreck which is why I stay away from these reports. Even my carbon dioxide numbers went up, I don't smoke, but these bp pills make me so tired I get worn out going to the mail box and sometimes I get out of breath. But I'm not going to panic!  I'm going to get a glass of wine instead,  Love Billie

      • Re: Sprycel Dosage
        pamsouth Registered Users
        Currently Being Moderated

        Pam wrote:

         

        Billie Murawski wrote:

         

        Hi Pam, M,

           Everyone knows I don't understand the numbers, But when I had my bw done in Jan. my wbc was 4.5, the cc center just sent me some results from monday and my wbc is 8.0,In Jan. they automatically gave me my numbers,  I just had my bw done Mon. and the nurse called me Tuesday and said don't decrease my dosage. And have the same bw done May 30, there was no way they could have gotten my results in one day, so I told her to send me a copy when they get the rest of the results, they sent me some results today but not all of them, but I compared them to my results from Jan. and they look kind of scary to me. I'm not going to panic, I'm not going to panic,I'm not going to panic, because I'm an idiot when it comes to cml numbers, and computers, I'm a wreck which is why I stay away from these reports. Even my carbon dioxide numbers went up, I don't smoke, but these bp pills make me so tired I get worn out going to the mail box and sometimes I get out of breath. But I'm not going to panic!  I'm going to get a glass of wine instead,  Love Billie

        Billie,  I don’t want you to panic, or be a wreck, but sense you already got the lab report, why don’t you share the number with us. That is weird the nurse calling you and saying don’t change the dosage, when they couldn’t have had the labs, that is strange!!!  Maybe she was just referring to your CBC they can get them in Minutes its the PCR that takes awhile. But I have went in to a cancer center and had a drawl for a CBC and had it with in 15 to 20 minutes. So I am assuming it is your CBC they are looking at.

         

        I was thinking you were on Sprycel 100 mg and 50 mg every other day.  Did I spell that right, it is about 1 am and I am braindead.

         

        Well got to check in with PamM and the bears.  You know I think that is what keep PamM going all those critters.

         

        How is the whine, sorry wine, (see I told you i got sundowners) are you feeling better?  Glad you don’t smoke!!

        Judy just gave me a good laugh.  Don’t think I need any wine.

         

        PamS

        • Re: Sprycel Dosage
          billronm@roadrunner.com Registered Users
          Currently Being Moderated

          Hi Pam S,

          I'll try to cipher the numbers from what little bit I know. not all of them but the ones I recognize.

          Jan. 2012                                                                                                                                           April 2012

          wbc 4.5                                                                                                                                                      wbc 8.0

          rbc  3.42                                                                                                                                                     rbc  3.53

          hbg 11.9                                                                                                                                                     hgb 10.9

          hct 35.5                                                                                                                                                      hgt 32.9

          potassium 5.4                                                                                                                                            potassium 4.6

          carbon dioxide 25                                                                                                                                      carbon dioxide 30

          platelet 281                                                                                                                                             platelet 342

          mcv 103.8                                                                                                                                                     93.1

          mch 34.7                                                                                                                                                      mch 30.9

                                                                                                                                                                               mvp 7.3 fl

          This is the best I can do, these are the ones that were highlighted.                     I guess I'm doomed                                   Lots o Luv Billie

          • Re: Sprycel Dosage
            hannibellemo Registered Users
            Currently Being Moderated

            Billie,

             

            I do think it is amusing that our first instinct is to panic when our counts increase even in the "normal" range. I'll never forget when mine finally reached the normal range, I thought there was something really wrong!

             

            Have you been sick or maybe fighting off a cold? That could also count for the increase. Why don't you go back in a week or two and have them redraw (I personally wouldn't wait until the end of the month, but then that is just panicy ole me).

             

            Pat

          • Re: Sprycel Dosage
            pamsouth Registered Users
            Currently Being Moderated

            Billie,

             

            I don’t see your GFR, BUN & Creatinine, that would have to do with your kidneys.  That would come under Comprehensive Metabolic, do they list that?

             

            Other then, you might want to watch your RBC & your HGB, that they don’t drop to low, they look pretty good. 

             

            I like mine CBC as close to normal as they can be. If they are just riding  a little high or little low, on the range, written to the right. I am a pretty happy camper.

             

            For example your RBC were 3.4 to to 3.5 pretty much stayed the same. The normal range on my lab paper work is 4 − 5.4, yours normal range may be different, look to the far right and you will the standard range.  So your RBC is just a tad lower then normal, for me I would be happy with that.

             

            Your HBG WAS 11.0 then dropped a little to 10.0, normal on my lab paper is 12 −15.

             

            Your HCT WAS 35.5 then dropped to 32.9, normal on my labs reports is 35-49.

             

            Your HBG & HCT dropped just a smidget lower then the normal and lower then your previous report.  I would just watch that they don’t drop to low.  That is when I get a little worried when they all drop low like my RBC, HBG, HCT.

             

            However most doctors don’t worry if you ride a little on the low side, if they drop to low, they may give you iron pills or something. 

             

            From time to time mine CBC counts drop a little bit low, but usually they come back up where I am just riding a little on the high or low, of normal range.

             

            WBC 4.5 TO 8.  Normal range is 4.5 11.5.  I would NOT worry about the increase, as you could be fighting off a little cold or allergy or something.  WBCs help your body fight infection by protecting against foreign invaders such as bacteria and viruses.  Remember even CML white cells still do their job although probably not perfectly as a normal cells. But they are mature cells not immature like a blast or acute, CML cells do function. 

             

            All in all I would say your labs look pretty good.  Again I would just be watching, they don’t get to low, but I am not a doctor, and you are a unique person on a different drug with different circumstances then me. 

             

            Again when my counts start to get a little low, I notice usually on the next labs the counts are back up closer to normal range.  I think sometimes our bodies may be adjusting to a cold or something so counts tend to fluctuate some.  I just don’t like it when I notice several of the counts continually going below a normal level, then I keep my eyes open.

            Like I said so far when my counts get a little low, they come back up closer to normal.  Again most doctor don’t worry if the counts ride a little below normal.

             

            Usually low counts are aside effect of the TKI. I was always told TKI only killing bad cells (not counting the side effects issues).  When my WBC got down to 1.7 I said hey doc where are the good ones, she said you don’t have any.  But sometimes I wonder did we really have to let my count get that low.  I am a little bit to old, I think, to do that agian!!


            When first diagnosed, and on TKI’s, usually they let your counts get all time low, then i went off to the hospital for IV of antibiotics,  then off meds until they start to come back, then low dose until they get closer to normal range. Hopefully the healthy stem cell will have populated as CML is suppose to be slower then the normal or good cells.

             

            Actually hind site, I wouldn’t let mine counts get that low again.  My white cells got to 1.7 and my blood pressure dropped 60/30.  Actually it scared the doctor, too.  Have low counts can leave you open to virus bugs etc. 

             

            I think the younger people are more resilient.  We took care of my mom for 3 years before she passed away.  When i moved her down here with us she was on so much medicine.  I took her to my doctor who said no one knows how all these medicine works together.  She was a mess. I took her to a geriatric group and we weaned her off a lot of med’s and lower doses. 

             

            They said older people can only take child like doses. 

             

            My husband got so bad a couple years ago at the of 69 years old.  I was bathing him and feeding him, as he had swollen up so bad, and could barely stand up and couldn’t use his hands.  I was taking him to multiple doctors.  He was taking so many med’s and no one wanted to take him off any med’s from his primary doctor.  Well I finally said he is dyeing on me anyhow, or at least killing me, taking care of him.  I weaned him off most of his med’s and he went to physical therapy, and he has been working for over a year now, 32 to 38 hours a week.  It turned out He was allergic to the arthritis medicine a generic of Mobic, Molaxicam or something like that.  Then the primary doc added all that other medicine to the arthritis medicine like pain pill, neurotic, predisone, etc.  Then my husband went straight down hill.  Now that he is off the meds and working, He said he would rather live with the arthritis, then take all those meds, that make him dopy & helpless. 

            He controls his diabetes and blood pressure by walking and diet.

             

            Of course we are dealing with CML which is a different beast.


            I like Scuba theory and it is working for him and others.


            Also Trey put out a good thread, about doctors changing their theory, on 400 mg Gleevec and side effects. Dr Druker has said it is Ok with lower dosage as long as they maintain a minimum Gleevec plasma drug level of 500 ng/ml. That resistance is probably there from the beginning stages of CML. .Hard for me to remember exactly what he said, you probably read the article it was a couple days ago . 

             

            Look pretty good to me. 

             

            Have a great week-end, Pam

             


          • Re: Sprycel Dosage
            hannibellemo Registered Users
            Currently Being Moderated

            Billie,

             

            I felt the same way at my previous to last blood work. My WBCs and platelets had doubled and I was sure that I'd been off Sprycel too long and they were on their way up. On Friday everything was back to low normal - go figure.

             

            Sometimes we just have blips! You're fine!

             

            Pat

            • Re: Sprycel Dosage
              billronm@roadrunner.com Registered Users
              Currently Being Moderated

              Hi Pat,& Pam, & Judy, & Pam, & Scuba, & Pam, & Pin,& Pam----Hey say Pat,Pam,Pin,Pam,real fast 4 times!

                Thanks everybody, I'm calmer now. I guess I got so upset because after 5 years, I didn't think my numbers would jump around so much, but like Susan and Pam S said their numbers still jump around every now and then. And they have had cml longer then I have. I've decided I'm better off not checking my numbers, I'll let my onc. take care of that. I have had a lot of sinus trouble lately, so I suppose that could affect my bw, plus I'm decreasing 2 meds, & It's only 2 months on this bp med, so my body probably needs time to readjust to these changes!  I'm all better now  Lot's o Luv Billie

              • Re: Sprycel Dosage
                pamsouth Registered Users
                Currently Being Moderated

                let see it is 12:22am so that would be a good morning.

                 

                Getting reading to sign off, but had to check in with you.

                 

                I like how creative you are like “-Hey say Pat,Pam,Pin,Pam,real fast 4 times!”"

                 

                I think you should give yourself a lot of credit for just reading all our post and coming up with “taking sinus med’s decreasing meds, changing meds”  Lots of things can cause are numbers to jump around.  I don’t get to nervous anymore like I did that first years.  Pins and needles everytime I got my labs, thought I was going to die.  Well it’s been almost 7 years now on Gleevec and I am still kicking around. 

                 

                Seriously there are somethings that still make me a little nervous.  But my numberers jumping around a little, with in a certain range, I am use to.  I think as time goes on we get use to what might be out of the norm for us.

                 

                You still want to check your numbers, doctors are human and they do make mistakes.  I don’t say that around my daughter and son-in-law as he is a doctor and she is an RN.  however being a caretaker for my mom for 3 years and others, I have learned to pay attention and when the red flag goes up, I’m am on my toes.

                 

                Billie we are lucky we have this board.

                 

                http://www.bluemountain.com/ecards/friendship/anytime/card-3170178

                PRAYERS & HUGS XOXO

                 

                I love you guys,  Prayers always, hug xoxo

                • Re: Sprycel Dosage
                  billronm@roadrunner.com Registered Users
                  Currently Being Moderated

                  Hi Pam S,

                     You are so right, we are so lucky to have this site. I wish it hadn't taken me 3 years to find it. I see you're up late too! I was so tired about 10, then I guess I got my second wind and I can't sleep now, I guess I'll put on one of my concerts, that always helps me unwind.

                    You have a good night and sweet dreams,                Lots 0 Luv Billie

              • Re: Sprycel Dosage
                pammartin Registered Users
                Currently Being Moderated

                Hey Billie, sent you an unedited version of todays event in CVS parking lot.  Judy and Marnie have it also.  No good/bad this time so Ron won't consider committing you again, but use the restroom first........do not say you have not been warned

                • Re: Sprycel Dosage
                  billronm@roadrunner.com Registered Users
                  Currently Being Moderated

                  Hey crazy lady,

                     I read it, I'll have to read it again tomorrow. I'm so glad you had such a lovely weekend!  MIL, BD, & steroids, big mouth nerdy kid, hits your car, & yells at you. I bet Bob and Nick are sleeping with one eye open. I bet the goofy eyes , were an added attraction! I bet nerdy kid is now wearing depends.  my eyes were a mess for the 3 years I was on Gleevac, I never knew what they were going to look like in the morning, and if that wasn't bad enough both eyes were always different., one eye would slant down and the other eye would slant up, sometimes they were like 2 slits. I looked like a cross eyed lynx.And all around the outside of both eyes They were pure white,just like a raccoon. I could push the fluid around and make them different shapes. After I was up a couple hours they would look better, but they were always swollen. Ice Cubes helped a bit, my eyes were real dry also. My eye doc gave me 2 different eye drops to help. As soon as I went on Sprycel the swelling went away, but now my eyelids are wrinkled from being swollen for so long. I think you should use cold compresses, instead of steroids, before you kill someone, or beat up a bear.  Good Work With MIL though, you should have made her shovel some gravel. Catch you tomorrow, Lots o Luv Billie

                  • Re: Sprycel Dosage
                    pammartin Registered Users
                    Currently Being Moderated

                    Billie

                    Bob and Nick are tiptoeing around the house.  I believe Bob was hoping doc would taper me off starting today, I called like I promised, she wants me to continue, we still don't really know why the swelling is there, so tomorrow I should be less of a psycho because the dosage begins to lower.  I did notice one thing today, I have two refills on the bottle, if I have to do this over a period of time, I cannot promise someone is not going to be destroyed.  I had better start my defense ideas now.  Although it isn't funny I had to laugh about your puffy eye story and I can relate.  The right eye is worse than the left, if I lay my pinkie across the white fluid filled sack under my right eye I can still see the darn thing on three sides, I tried to move it around just because you said you could and I can't resist an opportunity, but it really didn't want to be anywhere but where it was.  Hopefully it will begin to go down soon.  Like you by the afternoon it is not so bad, but I am sure it played a large piece of my over all appearance of an escaped convict who has serious anger and control issues yesterday.  I thought of going to buy one of those cold masks, if nothing else I could put strings on it and wear it outside, then instead of escaped convict with anger and control issues I could pretend to be the newest member of the Avengers!  I think they sell them in a peaceful blue color all I need now is an outfit to go with my new image.  Oh how the mind wanders........

                    • Re: Sprycel Dosage
                      billronm@roadrunner.com Registered Users
                      Currently Being Moderated

                      Pammie,

                         I suggest a bright blue lame' jumpsuit, bright blue greek sandals (the kind you lace up to your knees), and a crown made out of peacock feathers,with a matching peacock feather cape. Luv  Billie

                       

                      Don't apologize about my eyes, I used to entertain myself for hours,changing their shape. It wasn't as much fun on days where one eye was so swollen all you could see was a slit, and the other eye was open. I called those my Rocky days. I don't know why I never told my onc. how bad they were in the morning, it just never occured to me. I was a mess already anyway. It was a great way to pass the time, when I had the big D.

                      I would just sit on the throne,and play with my eyes all morning.

                    • Re: Sprycel Dosage
                      billronm@roadrunner.com Registered Users
                      Currently Being Moderated

                      Hi Pam,M

                        How is the swelling around your eyes? Maybe you need a water pill, it wouldn't hurt to ask. Sprycel does cause fluid build-up. I've been on a water pill for 2 years now. Just thinking, I do that occasionally!  Billie

                      • Re: Sprycel Dosage
                        pammartin Registered Users
                        Currently Being Moderated

                        Since I struck out with having the steroids lowered, I am going to add the water pill.  I will wait till the steroid runs the course, 6 days and counting, tomorrow I might be semi fit to be around, it is a much lower dose.  I went to a little get together this evening, first time I have been out in months after 6 p.m.  We laughed, verbally beat up a few people, and then drank some wine.  It was a nice evening.  I have everyone all convinced we should do the wine walk May 18th, to make sure a few are going I am headed out tomorrow to get their tickets so they are obligated to go.  I have only one rule from Bob, he does not want to read about us in the paper the following morning.  Think I am safe, he leaves here about 2:30 a.m. so the paper won't be out till long after he is at work.  

                         

                        Swelling is much worse in the morning hours by afternoon it is still present but less noticable.  Still trying to figure out the difference between the edema and basic swelling, because edema does not go away as the day progresses (learned that from Judy)  My journey continues

  • Re: Sprycel Dosage
    Pin Registered Users
    Currently Being Moderated

    Pam, with results that good I think your biggest challenge is going to be finding a doctor that is ok with dose reduction. You've done so well I can't see why they won't at least trial standard dosage (is that 70mg?) for you at least to start with and see what happens - if you don't hold onto your PCRU well, that might change things of course but if the swelling is impacting on your quality of life, well that is a serious problem. I think if it were me and I could tolerate the eye swelling (depending of course on how bad it is), I would probably wait for 3 PCRU results in a row to feel like it was stable and then I could compare what happens with the dose reduction with that. Also, is it fluid retention or hives type swelling? My eye oedema was a big problem for the first 6 months or so of my treatment, but (for now!) it seems to have calmed down a bit - I think it's making room for all the other side effects to creep back in

     

    Also, Billie - no need to panic just yet! If high white cell counts is the only issue, I don't think it's a problem just yet (also, it's still well within normal range) Enjoy your wine!

     

    Cheers, Pin.

  • Re: Sprycel Dosage
    scuba Registered Users
    Currently Being Moderated

    PamM - I take 20mg Sprycel*. I went from 55% PCR to 0.06% (Feb. test) in seven months. My next PCR is in a few days and I half expect another drop in PCR if not outright CMR.

     

    You have already hit your CML hard and fast. Your Leukemia burden has been reduced an order of magnitude lower than mine (one log lower) - and I got to where I am on only 20mg Sprycel*.

     

    There is mounting evidence that high dose Sprycel may not be necessary to maintain for long periods - that starting high and reducing is becoming the preferred path. Dr. Cortes is leading in this research. Admittedly I am one of his guinea pigs. I have asked him several times if I should increase my dose (just to 40mg) to "hit the CML hard and fast") and he told me I am already doing that. And he also said, "No".

     

    If side affects are an issue for you - and your note suggests that it is - then dose reduction is not only recommended by preferred. CML at the level you are at - is a very slow disease. You can afford to take 3 months and try the lower dose and test again. Chances are your PCR will either be the same or even go lower. And if it goes lower - you have a new lower dose and less side affects from which to continue.

     

    * I do take 4 grams C3 Curcumin with Piperine every day. There is evidence that Curcumin augments the effectiveness of Sprycel. It is possible, although not known for sure, that my low dose Sprycel is working as well as it is because I also take Curcumin. I am not willing to stop Curcumin to find out if my low dose Sprycel response continues. Curcumin has other healthy benefits that I enjoy (arthritis). Dr. Cortes suspects the Curcumin is helping "a little bit", but that I would probably get the response I am seeing anyway with the 20mg. Sprycel because he has other patients on low dose Sprycel (20mg.) that are having a somewhat similar response to me (who don't take Curcumin) - but he admitted my response is deeper and faster than any of his 20mg. patients. He is curious if I can get to CMR on 20mg. Also - I have no side affects that I can feel. None. And that, more than anything else is why patients should consider dose reduction as a viable strategy.

    • Re: Sprycel Dosage
      pammartin Registered Users
      Currently Being Moderated

      Scuba,

      Thanks, I have followed your journey since I began posting on here. I need to go back and read everything again from Pin also, I got lost in the laughter when Pamsouth said she had CML 200 and Judy finding it.  Add that bear that I thought was racoon to the day and I can't focus for nothing.  Sat up half the night trying to get better photos, LOL  I will read and respond in an intelligent (or as best as I can) manner.  Thanks everyone now to sort out the serious from the funny!

      • Re: Sprycel Dosage
        Judy2 Registered Users
        Currently Being Moderated

        Hi Pam M and Billie,

         

        Pam, how is your angioedema today? I am hoping you will be able to lower your dose of Sprycel at some point, it is miserable to be swollen. Will talk to you later.

         

        Billie, Please do not worry about the increase in your wbc, easier said than done. This has happened to Pam M and myself as well.I am sending you a personal email.

         

        xo,

        Judy

        • Re: Sprycel Dosage
          pammartin Registered Users
          Currently Being Moderated

          I need to read all these posts, edema is still there, bit the bullit and have the steroid.  Billlie, I need to send you email, my white count was almost 13 about 6 weeks ago.  two weeks later it was back to 5.1  will touch base ASAP

          • Re: Sprycel Dosage
            Judy2 Registered Users
            Currently Being Moderated

            Hi Pam M,

             

            Did you say you started your steroids? Don't be surprised if you have really weird dreams. When I was on a high dose of prednisone I had strange dreams for the first couple of weeks (I don't think you will be on a high dose for long, though). One night I had a dream that I was in a Chinese restaurant and was being chased around the restaurant by a waiter with a spoon. He was using the spoon to try and catch me as if it were a butterfly net. Also, had a craving for honey dipped munchkins all the time. Pam, as I writing this I'm thinking that perhaps you shouldn't take your Ritalin while you are on steroids. The two together might be too stimulating. Just a thought, they are few and far between these days.

             

            Hugs,

            Judy

            • Re: Sprycel Dosage
              pammartin Registered Users
              Currently Being Moderated

              Hey Judy,

              Ritalin is off the table while the steroid is on the menu.  Thanks for the note though, just in case.  I am set up, feeders are filled, feeder frame is 10ft closer to the house and camera is full of batteries.    I am ready!  I have been hyper/nervous all day, I blame it on the steriods.  Three days of high, then three days of medium and three days on low dose.  How long will it be if you have a guess before I see any reduction of the edema?  I know everyone is different.  Today is has been weird, hardly anything below the eye but my eyebrows and eye lids are really large, the eyelids are laying over on themselves, I would blame it on wrinkles and age but it wasn't that bad a few days ago.  Hope you are having a good day, you need a check list, bathing suit, check; house plant, check; video of gorillas at Pittsburgh Zoo, check.   (Stop laughing I know you are!)

              • Re: Sprycel Dosage
                Judy2 Registered Users
                Currently Being Moderated

                Hi Pam,

                 

                When I was in the hospital with fluid from my kidney problems it took one week on massive doses of steroids for the swelling to go down. With the angioedema it depends how bad the swelling is and also I combine my steroids with Allegra and sometimes Benadryl so I'm not sure how long yours will take. Regarding the gorillas, your story kept we up all night, I felt like I needed a cigarette!!! YOU ARE RIGHT, I CANNOT STOP LAUGHING!!!

                 

                I am hoping we can talk tomorrow, I need my Pammie fix.

                 

                Hugs,

                Judy

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