27 replies to this topic

[scuba]

Hey Chris - just curious ... Since you have stopped taking a TKI for months now, did you notice any change in your skin, hair or anything else that reflects stopping the drug? I don't have any side affects, but did notice a bit more Gray in the last year. I want to blame the Sprycel ... so when I stop taking it, my hair will go back to normal color, my muscles will rejuvenate and I'll have the vigor of a 20 year old ... o.k.... maybe not, but still curious if you have noticed a difference. Thanks

[Skittles]

Chris thanks for the explanation.  It seems as long as we can maintain MMR we will do well.  I know I speak for everyone when I tell you we are all watching your journey with baited breath praying this is going to be the wave of the future for some of us.  You are so brave to take this path and we all rooting for continued success for you!!  Have a great day and thanks again for sharing.  Skittles

[ChrisC]

Hey M -

Yes, there are little changes, such as a little more hair returning to various parts of the body, maybe a little change in skin but dry skin wasn't a problem for me — when I was younger I had oily skin: I was always told that would be a benefit when I got older; true: instead of dry skin I've now got normal skin. I'll likely continue to wear sun block and a hat, why not?

Since dx I have achieved a nice silver/brown head of hair (I prefer silver to "gray"!) and sometimes I ask myself "Is that looking a little more brown now?" (maybe, or may be the lighting . . . ). My biggest druther is that my real energy returns: having to rest so much, for a year or so before dx and then 2.5 years since dx, my muscles are semi-lost (use 'em or lose 'em), so jumping back to old normal life, pre-fatigue, is a slow hop rather than a jump. Age happens, and there are changes anyway. I'd say I'm about 21 years old inside, and 60 years old in reality — with a few years downtime to reverse! I've got hope that I'll still be surprised by good changes happening overall, and with Spring here there likely will be more outdoor activity!

As for the aches and pains, I am looking into learning more about foods that cause inflammation throughout the body. Dairy seems to be a trigger for me, so cheese isn't being purchased anymore. One change at a time, to see what helps.

The big change from stopping Sprycel, for me, has been the gradual passing of the debilitating fatigue (5 naps a day, lots of pre-planning to get anything done; it would take me two hours to change the sheets on the bed, with long rests after each corner was tucked in, etc.); now I can just not overdo things and I'm still awake, even arriving home from errands with the energy to enjoy life. Making the bed in normal time makes me smile every time!

There were no sudden changes, it's all gradual, for me anyway. But cumulatively the trend is in the right direction and I am hopeful that they positive changes continue, even accelerate!

ChrisC

[jcoon]

congratulations Chris!!  This gives me so much hope.  i received my CML diagnosis when i went in to get a physical because my husband and i wanted to start trying to get pregnant.  so that obviously had to be put on hold.  i received full remission quickly with sprycel, now the plan is to go off of it temporarily (maybe longer?) while i attempt to grow a healthy fetus   we are waiting for the OK from my onc. before we start trying but this gives me hope that i will be able to stay off of it at least long enough to have a healthy normal couple of trimesters.  thanks for the info!  keep us updated!

jenelle

[ChrisC]

Excellent vision of the possibilities, Jenelle! Best of success with it. As you know, the longer you remain at "undetectable" the better your chances that your body will be up to the task. Let us know how it goes!

ChrisC

[TeddyB]

What great reading, truly inspiring for me, i hope you are still doing well off Sprycel Chris.

This gives me hope, as i too had a high wbc (270k), normal platelets and a very large spleen when i was dx`d. When reading guidelines etc i usually read that big spleen=accelerated phase CML, and im so afraid of being in AP, even though my onc says i am not. (He even says it was caught pretty early)

I thought that big spleen meant you would always be a High Risk (Sokal, Hasford etc) patient and never being able to go off a tki, like ever. Getting closer to my 3month checkup i get nervous and sometimes think ill probably be dead within a year (knock on wood). Then i get back to reality and think to myself, the 400mg Gleevec has been working great so far, and there is no reason for it not to continue working, and i relax a bit more. Luckily i also have this forum to come to and ease my mind, reading other peoples stories, especially reading how people with big spleens actually do very well.

I too was always tired prior to dx, but i blamed my 2 small, overly active children, and my lack of sleep + working shifts on top of that. All i noticed was a lump in my stomach that could be felt when laying on my left side so i went to see the doctor. (This was of course my spleen)

Sorry for reading posting so late after on your thread, but i was dx`d in april and didnt find this forum until the start of may and i didnt get the chance to read it until now.

[ChrisC]

Hi Teddy,

Nice feedback, thanks. Glad it helps to read about it!

Best wishes to you for a good checkup (next week?) and excellent progress. It takes time to process the CML diagnosis, and for awhile fearful thoughts seem like they win. However, it sounds like you already are getting to choose whether or not such thoughts are worth entertaining, as you have gained needed knowledge and perspective. Hooray!

Your hands are abundantly full with your kids, who will have you around for a long, long time: do not doubt it!

It is wonderful that you have both found this site, and that you are reading and learning: an educated patient likely gets the answers they need from their doctors (or the prompt to find a new doctor when needed, and the information on where best to look for suitable ones).

Glad you are posting your progress, and we look forward to hearing your results, questions, jokes, adventures, etc. Imagine this: in the near future, you will be posting assurances for newly diagnosed folks, until the advent of some wonderful CML-prevention technique is developed!

ChrisC

[TeddyB]

Checkup + blood draw this Thursday actually

Hope i get the results quick.

Thank you for your encouraging words. Watching my kids grow up is my number one goal.

Lets hope they soon can use some kind of combination therapy to wake up those hard to reach dormant leukemic stem cells and let the TKI kick their butts. Any other form of cure would of course also be welcome, who knows, maybe CX-5461 will turn out to be something great