Jump to content


Photo

Sprycel, 6 mo MMR

Started by jrsboo , May 17 2011 06:11 PM

  • Please log in to reply
12 replies to this topic

#1 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 May 2011 - 06:11 PM

Hi All,

Sprycel is amazing, I just reached MMR in 6 months.  I was dx in late Sept. 2010.  Started Sprycel in the first week of October, and last week's results from the 6 month bone marrow aspiration were fantastic!

Still dealing with all the attendent side effects, but am glad I pushed for Sprycel as my first line drug.

I hope this info helps anyone questioning which drug to use!

Caroline

ps.  Seattle Cancer Care Alliance did this latest bone marrow aspiration.  No pain.  None.  Although husband states that I started to moan or groan during it, they pushed the plunger down on the sedatives and poof!  I woke up in recovery, ate a cracker, and we left.  A tiny bit sore the next day, but that was it.  Fantastic!!


#2 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 May 2011 - 07:33 PM

HI Caroline,

Congratulations on the MMR.

Gerry


#3 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 17 May 2011 - 09:09 PM

Dear Caroline,

Congratulations, I was afraid that when you got so sick it might set you back a little bit. I get my genetic bw may 31 that's my 6 mo mark on S if it's okay he'll reduce my dosage.Yeah! How's your therapy going? My brain fog is gone I actually drove today with no problem. Saw my Shrink today told him about the fatigue etc. etc. He doubled my dose of cymbalta and gave me a script for 30 free pills of a new drug called Nuvigil to help me stay awake during the day I'm so tired. Had the script filled because it was free asked the pharmacist if it was okay to take with my other meds he said okay. I don't like meds that might hop me up. And I won't take anything not even vitamins without checking with my onc. Good thing he said that Nuvigil would interfere with my Sprycel  which meant I wouldn't be getting the amount I need. Ihad the same psychiatrist for 30 years for clinical depression and panic attacks. He never would have prescribed that med. And I drag around all day then at night I can't sleep even though I'm exhausted and force myself not to lay down all day, so he asked me if I wanted a script for sleeping pills. I have been on these meds long enough and I know my condition well enough I basically can prescribe them myself. My other doc would never double my dose of cymbalta and give me uppers and then sleeping pills. I also have xanax in case I get a panic attack but I never take the dose prescribed. I only take one if I get a Panic attack which is very seldom except lately and I'll take one if I really can't get to sleep. I refused the sleeping pills. And I won't double my dose of cymbalta that would be 120 mg a day. I only go to him because my other doc retired. I go every six mos cause I need the scripts just the antidepressant and xanax for the panic disorder. I'll get through this depression like I have many times before and when the weather breaks I'll be outside more. Hang in there it's so hard living with this disease but I truly think when we get better weather more than 2 days we will all feel better.AND YOU REACHED MMR IN 6MOS. That should get you're motor going.or at least started. Try not to think about cml I know it's hard.At least you're headed in the right direction.

It's so easy to say to someone else and so hard to accept it ourselves. But it really is true. Love Billie

I'm going to push the post button now I hope you get this. I can't live without e-mail


#4 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 17 May 2011 - 09:31 PM

Congratulations, Caroline, that's great news!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#5 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 May 2011 - 10:36 PM

Billie,

That seems like a huge amount of psych-helping drugs.  Is that really best?

For sleeping, have you tried changing when you take the Sprycel tablet?  I take mine at night, right before bed and sleep fine.  If I take them in the morning, I sleep all day long. 

Caroline


#6 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 18 May 2011 - 12:23 AM

Dear Caroline,

I have tried taking my S in the am and at bedtime I get nauseated and have these really weird dreams. So at lunchtime works best for me even though about an hour later I feel like I took a sleeping pill. I have to take meds for those other 2 health problems I have so I try to space everything out it ain't easy.I figure it's just a stage I'm going through I just need some sunshine and get outside and pull weeds and separate my flower beds, do you need any hostas I started with 4 a zillion years ago now I must have 4 hundred. We have an acre of property so there is always something to do out there. And no I am not going to take any more meds! I just couldn't believe he offered them to me. No wonder people are walking around all wired up or acting like Zombies. Especially elderly people.I guess some people are so desperate they'll try anything.I have always been afraid of taking pills I won't even take pain pills even after surgery. I'll fill the script but usually I'll take motrin or ibuprofin for pain.

How are you're little puppies handling all this rain? My little Annie doesn't like it at all so at least when I take her outside she does her buisness and wants to come right inside.Since she went blind 2 years ago we take her out ont the leash most of the time. During the day we'll let her roam around we're always with her but it only takes a second.

We have motion lights on our garage so far I have seen a racoon, a skunk,and during the day we have 5 turkeys and 4 deer running around the neighborhood. And they are fearless it's so cute. Last year we had a coyote that wasn't cute.

Oh I have to tell you this, last summer we came home and there were all these really deep circular indentations all over our lawn, we thought we've seen it all even horses getting spooked but these were like the size of a dinner plate. I'm ready to start packing and Rons taking pictures I was getting the hell out of here and taking my little Annie with me.

It turns out someone that lives along the lakeshore hired the amish to build a house for them, they do beautiful work. And one of their horses like clydsdales got loose and took off and destroyed a lot of lawns in our little suburban town. That was a first. But they finally caught the horse and nobody was hurt I was afraid he might break his leg or something thank God he didn't poor thing. But all the rich hoity toity people just complained about their yards. I was worried about the horse.

With all this crazy weather the whole country is seeing things they never saw before. You Better get a tazer gun.

                                                         Again I'm so happy for you lol Billie


#7 Cathy

Cathy

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts
  • LocationWilloughby oh

Posted 18 May 2011 - 07:16 AM

Hi Caroline,

That is wonderful for you and and to hear. I've been having a rough time failed gleevec after 9 months, went to tasigna got pancreatitis in 3 pills off for a 1 1/2 months to get my counts better to start sprycel only been on it 2 weeks. The tiredness is killing me trying to work full time and the headaches, achyness and my hair hurts but not like on tasigna. I keep telling myself just hang in there its better to me then tasigna and my fish counts keep going up so I have to hit this now! I'm going to be optimistic and shoot for 6 months too!

Enjoy your goal! 

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 

#8 janner25

janner25

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 May 2011 - 09:09 AM

AWESOME news!  Congratulations on reaching MMR - AND on the bone marrow feeling....mine hurt for over a week...but at least I should have to have another one based on my results .


#9 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 May 2011 - 10:35 AM

Dear Cathy,

I am so sorry that you are having such a hard time with the different drugs!  I have no idea how you are continuing to work.  While I have hit MMR, the side effects for me are just about debilitiating.  I can really only concentrate (at the levels necessary for my type of work) for about an hour a day.  After that, I am only good for puttering around the house, or getting the coupons ready for a shopping trip.  (I just love that extreme couponing show on TV!)

The fatigue is getting slightly better for me, now at the 7 month mark.  But the Sprycel has done a job with my immune system, and it doesn't seem to turn on the way it should, so I have, right now, three different infections going on.  Requiring 3 new doctor visits, since I now live in the land of specialist doctors, and no one knows anything about any other areas than the one they specialize in. 

Ah well, it is sunny out, and I am going camping this weekend regardless!  It is finally morel mushroom season here in the rainy PNW, and we are GOING. 

I hope you react to sprycel and reach your own milestones as quickly as I have!

Caroline


#10 Cathy

Cathy

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts
  • LocationWilloughby oh

Posted 18 May 2011 - 10:43 AM

Caroline,

Thanks but I get by I have to work one income and need my benefits. Allot of times I would love to stay home and rest but we all do what we have to do. 3 infections Now that doesn't sound good,I hope you get rid of them asap. Have fun camping. We are getting so much rain I'm sure you could find mushrooms. Have Fun

Cathy 


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 

#11 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 May 2011 - 10:43 AM

Hi there Janner,

Yes!  Great BMB for me, and I don't need another one for two years!!!!!  Yippee. 

Although a funny story: I was sitting in the new dentist's chair with a tooth ache, yet another new infection, and we were going over my unique medical record.  He had just finished telling me that I was going to need a root canal.  I thought that that was just about the worst news ever, but when I told him that I have to have bone marrow biopsies, he had his back to me, and I could see his whole body shudder, and he went "uuuuugh".   

And then it turns out when I went in for the root canal yesterday, I had done some last minute research on root canals 30 minutes before the appointment, and came across something called a "direct pulp capping"  a new alternative to root canals.  Mentioned it to the dentist, and he said "OK, let's see if we can do that instead." 

And the angels sang.

So I did not need a root canal, just the capping procedure.  Which was the same as just having a cavity filled.  They take out the cavity and put a polymer up against the nerve root in your tooth.  I was still scared.  Mostly because I am terrified of the dentist.  There really wasn't all that much pain.  It is the unknown and the expectation of pain that is the worst. 

I am such a baby.

Caroline


#12 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 May 2011 - 10:47 AM

Dear Cathy,

I was just sending you sympathy waves.  I am amazed by your fortitude.  I applaud you for being able to do what you do!  And if I win the lottery (I don't actually play, I just dream about the winnings), I shall send you some!

Caroline


#13 Cathy

Cathy

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts
  • LocationWilloughby oh

Posted 18 May 2011 - 12:39 PM

Caroline,

Thanks, I keep saying I need to play the lottery!


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 

Back to Chronic Myeloid Leukemia


1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

    Blood Cancer Discussion Boards
  1. → Chronic Myeloid Leukemia
  2. Privacy Policy
  3. Discussion Board Guidelines ·