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8 weeks since Sprycel dose decrease

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#1 Guest_billronm_*

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Posted 23 July 2012 - 11:16 PM

Hi Everybody,

   On June 1, my onc reduced my Sprycel to 50mg a day. My iron was very low again, so he put me on 3 iron pills a day. I could barely take 2 so I never even tried taking 3 pills. My blood pressure was high 173/100 or something like that. I had bloodwork done on July 2, I saw Onc July 10th. My iron level was going up, but he still wanted me on iron pills, I told him I just couldn't tolerate them, so he told me to at least take 1 at bedtime. My blood pressure was down to 119/80 or something like that. I never did understand bp problems because mine was always low.The good news is my bw is still 0 and my bp is still going down. I have to get bw again well this month but just the standard wbc I get every month, The last week of August I get the full blood workup, And I see Onc Sept 7th. But it looks like I'll be off that #$%&#  BP med & the Iron pills. I'm ready to party hearty, But not with any mechanical bulls Lucky.!!!

      Whoopee Lots of Love Billie

#2 tiouki


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Posted 24 July 2012 - 01:53 AM

Hello there,

Have your onc thought about erythropoietin injection? (to increase the number of red cells, it heals anemia). I had it twice for the first months of sprycel, helped a lot, now I don't need this anymore.


#3 Susan61


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Posted 24 July 2012 - 05:03 PM

Hi Billie:  I am so glad to see you putting on some good news about your response.  Anxious to see how the complete blood work looks for you in August. Sounds like your going in the right direction.  BP can be such a pain. I have always had High BP which is why I am on BP meds for TOO Many years.  Its great when we can cutback or even stop some of our meds.  Go Party and celebrate.  You deserve it with everything you go through, and you never complain.  You just always cheer everyone else up with all the funny things you tell us.


#4 Guest_billronm_*

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Posted 26 July 2012 - 10:48 PM

Hi Pierre,

  I never heard of that kind if injection, I'm just taking one iron pill a day right now, onc wanted me on 3 a day but they made me sick so I managed to take 2 a day until last appt. My iron level was up but they wanted me to stay on the iron pills. I told him how sick they made me so he said to just take 1 at bedtime. So I don't get my iron checked again until Sept. Hopefully it will keep going up. Last summer it was low and I had 4 iron infusions after the fourth one I had an allergic reaction, so I can't get them anymore. 3 weeks after my dx 6 years ago I had to have 2 transfusions. If the iron pill doesn't help I'll ask him about the injections. I would much rather get a couple shots than be sick all the time from the pills. Hell once we get cml we're just a bunch of pincushions anyway.  

                                                                                            Thanks for the info            Billie

#5 Guest_billronm_*

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Posted 26 July 2012 - 11:32 PM

Dear Susan,

  Oh I hope your sciatica is better. Did you go to the dentist yet? I sure hope you're feeling better. You have to go buy something slinky and sexy for the wedding. Hey if Raquel Welch can do it so can we!! She's older than us. Low cut dresses and thigh high slits are all the rage these days. And don't forget the 6 inch heels. I can't do low-cut anymore because my cleavage fell down to my belly button. It has fallen and it can't get up.

As far as 6 inch heels go, they might as well wheel me into the wedding on a stretcher. Because one way or another I would end up on one .     Love Billie

#6 VickiW


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Posted 30 July 2012 - 04:56 PM


Remember me?  haven't been on for a while.  How the heck do I make these fonts bigger????  Glad to hear things are going in the right direction for you!    I don't have 6 inch heals anymore either. Swapped mine in this spring for much boots and got me some chickens!!!  Now I have pets that make me breakfast   Figured as long we have started looking like ma & pa kettle might as well live the part. 


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16

#7 Tedsey


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Posted 30 July 2012 - 09:09 PM


Sorry you are having such a hard time.  I know what it is like to suffer from severe anemia (I lived for half a year a couple points from what would put a normal person in a coma--not kidding).  Anyway, unless your hgb stays dangerously low with transfusions (usually the 2nd line of defense after the iron pill), I would not recommend erythropoietin injections (last defense).  Unlike Pierre, I did not have a good response.  It maybe raised me a point and a half.  It took a TKI change to raise my hgb to a more liveable level. 

Erythropoietin should only be given in the most extreme cases.  It is very risky to take this drug.  The FDA puts out an extreme warning on it.  One of the issues is that the drugs (there are 2 most commonly used) may cause another cancer.  If you don't desperately need it, I wouldn't even consider it. 

Iron pills are more or less a shot in the dark.  You have to find one that won't make you sick.  I found that iron asporate works for me.  You may have to try a few before you find one you can tolerate.  I get mine at Whole Foods.  I am surprised your onc keeps telling you to keep on taking an iron pill that makes you sick.  I am just baffled why some people have no idea what it is like to have compounded suffering.  Like CML and all its glories is not enough.  There is not just one kind of iron pill. 

Take care Billie.  I hope you start to feel better.  I always wish you the very best,


#8 Guest_billronm_*

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Posted 30 July 2012 - 11:03 PM

Hi Tedsey,

  Thank you for the information, I didn't realize there were different kinds of iron pills. My onc said he would prefer giving me iron infusions, but he is afraid to try them again after my allergic reaction to them last Sept. It was Venafor and that was supposed to be the safest kind. They were actually surprised I had a reaction to it. Also that was when my high blood pressure problem started too. I take 325 mg ferrous sulfate. In June when I started it I was supposed to take 3 a day. I was barely able to put up with 2 a day, I got so nauseated. So for the last 3 weeks I have just been taking 1 at bedtime, but I am still nauseated every time I eat. So I really am getting run down from not eating. I'm going to try that iron asporbate that you take. What mg. is it?  I'm so tired of being tired, and I'm so tired of taking pills. Every morning I get up all I can think of is I have to start taking pills all day. I always take my Sprycel but lately I've been skipping a lot of my meds and I'm not supposed to do that. I stayed in bed all day today because I just wanted a day so I wouldn't feel like crap. I was sick all night last night because I took that iron pill at bedtime. I keep calling Cleveland Clinic to see if they have come up with a surgery that can unblock my carotid artery it"s 100% and inoperable, it was 99% blocked in 1993 and they were able to operate.and open up the artery, I was way to young to have that happen but it's hereditary in my family,so it's blocked again. But that would be 3 less pills I would have to take if they could take care of that. Living with the possibility of a stroke is a lot scarier to me than cml. Then out of the blue I have high bp, and all those meds make me sick. I'm doing fine with Sprycel and my cml is no problem, My numbers are perfect except for the anemia. A couple weeks ago someone brought up the subject of medical id bracelets. I have to wear one because I'm a stroke risk, and if it's caught within 3 hours I can get a shot that can reverse the effects of a stroke. So having cml engraved on it later was just an afterthought, but if anybody has other health problems it really is a good idea to wear some kind of a medical id.

I'm so sorry Teds, I didn't mean to dump on you like that. I've just had a rotten day and you are so sweet and kind and considerate, all you have been through and still are going through, and you have the little ones, I admire you, do you realize how strong you really are?  I sure do  Love Billie

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