Jump to content


Photo

Doing just fine, is that normal?


  • Please log in to reply
9 replies to this topic

#1 Dina

Dina

    New Member

  • Members
  • Pip
  • 0 posts

Posted 27 November 2011 - 01:55 AM

Hi there,

I was dx three months ago and been on Tasigna for about two months now.

The CML was discovered  by a routine check up that I did every year. Physically

I always felt good, mentally was a different story, shock and devastation of course that

I'm still having some hard time with that news.

What I' trying to say here is that I really feel fine, I don't have any pain whatsoever like

muscle/joint pain, cramps, fatigue etc. They say that the first two weeks on Tasigna are the worst, but I was fine.

Maybe a little lower back pain especially the third and fourth day but luckily that pain went away already.

Had some issues with my pancreas numbers and low platelets but luckily they also bounced back

and the last time I checked they are within the normal ranges already, can't feel those.

Thought I was having an irregular heart beats but now I think that was caused from all that stress following my diagnosis.

The only side effect that I'm experiencing right now is a dry skin, especially on my face.

So, after reading all of the side effects that many are going thru I just can't help but wonder when and if

will I get some of those. Can the side effects get you at anytime? Is it normal not to have any pain?

I have been told that I have this disease but I don't feel it so I don't get it what's going on,

except from what my blood work shows of course.

I hope and pray it stays this way and wish everybody else would feel the same and I feel so sorry to hear what others are going thru.

Could it be that the three months are still too early for the side effect to kick in? Can they kick in at ANYTIME?

Wish I can change how I feel mentally though.



#2 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 27 November 2011 - 09:57 AM

Hi Dina,

I don't have any experience of Tasigna, but I would expect the side effects profile over time to probably be like Glivec in that whilst new side effects CAN crop up at any time, the general pattern seems to be that the more time goes on the less likely they are.  Some of us are really lucky with out TKI side effects and are busy running marathons and triathlons.  Some of us are unlucky and end up on disability.  Most of us are somewhere in between and we play then hand we've been dealt.

One thing that is pretty universal though, is that the mental side DOES get better over time - except maybe when waiting for results  As time goes on, your response gets deeper, the tests get further apart and you get used to living with any side effects it gradually becomes easier not to think about CML all the time and to get on with the important business of enjoying life.

I hope you continue side-effect-free and if you do don't worry - the marathon running isn't compulsory!

Phil



#3 mikefromillinois

mikefromillinois

    Advanced Member

  • Members
  • PipPipPip
  • 93 posts

Posted 27 November 2011 - 09:58 AM

Hi Dina,

Nice to hear that you are doing well.  I'm newly diagnosed too and so far my experience has been somewhat similar to yours.  I take Sprycel.  Until now my side effects have been pretty tame compared to others I read about here.  Mine have tended to "come and go" a bit.  My guess is that every human body is different and reacts differently to meds and other things.  There are probably other factors too like interaction to other drugs, overall physical condition, exercise, hydration, quality of rest, and so on.

As far as the "mental" part goes....hang in there and seek out support as you feel is appropriate.  In my case I was stunned, then pretty depressed, and now I spend most days not even considering my illness.  I have really come to believe that my illness has been a blessing in many more ways than it has been a curse.

Wishing you continued "doing just fine", good health, and many happy days...

Mike 



#4 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 27 November 2011 - 10:41 AM

First, the side effects are NOT a result of the TKI drug working against the CML, so don't think that having few or no side effects is a bad thing.  The side effects are a result of the drug inhibiting non-leukemic processes in the body, although mostly at a low level and the body can adapt and make up for it.

There are often three phases to side effects, consisting of an initial phase, an intermediate phase, and then a long term phase.  During the initial phase which varies by individual in time and intensity, side effects can be sharper and greater in numbers and types.  After the initial phase, the intermediate term side effects tend to settle in but some of them can reduce in intensity over time, sometimes a year or more.  During this intermediate phase it is still possible for some new side effects to come to the surface (such as skin rashes and such) as the normal cell turnover leaves the new cells that were affected by the TKI drug.  Then the long term phase side effects are the ones that have been there for quite a while and will likely be there for the long term. 



#5 Dina

Dina

    New Member

  • Members
  • Pip
  • 0 posts

Posted 28 November 2011 - 06:15 PM

As always Thank you everybody!

Hi Trey: So, I'm in the intermediate phase then, right?



#6 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 28 November 2011 - 08:26 PM

Everyone is different, but likely just entering it at this 3 month point.



#7 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 28 November 2011 - 11:26 PM

Dear Dina,

I'm so glad you're body is adjusting so well to your Tasigma.It only stands to reason that except for the cml you are in good health. I think in a lot of cases we have other health problems as well. In my case I have 2 other health problems that I have to take medications for. Now I developed high blood pressure not from cml the doctors tell me it's because I'm old and I have had a lot of stress in my life and it's catching up with me. If one more doctor says well because of your age etc. I'm going to punch thier lights out. I have a corn on my foot that's bugging me if I mention it to one of my many doctors they'll say well because of your age you've been on your feet so much (I used to waitress a lot) i'm going to say so if when I was 30 if I would have stopped working ate only baby food and crawled around on all fours I'd be in great shape now? I'll suffer with the corn. Why do they call them corns? Gleevac gave me a lot of gi problems but I had acid reflux problems for a few years before that, And I have vascular problems which I've had for years (hereditary) so all I do is take pills from morning till night so I truly believe if I could throw all those meds out the window I'd feel great. I've been on Sprycel for a year now at first I had the Sprycel headache for a couple weeks but that gradually went away and I'm tired a lot but I have to take 5 meds that MAY cause drowsiness! But as far as my cml goes I'm doing fine. I got a small rash on my face a couple months ago but thats the only thing I have gotten since I have been on S. Mentally at first dx that's all you can think about but as time goes by you'll think about it less and less. And remember not every health problem is cml related you're just getting old! Sincerely Billie



#8 Dina

Dina

    New Member

  • Members
  • Pip
  • 0 posts

Posted 28 November 2011 - 11:39 PM

Thank you Billie, you are a very funny person and I love to read your comments.

I'm so glad to hear that you are doing fine after all the medicine you take. I often

laugh at my dad when he says" (he is 76 years old and he takes like 12 pills a day)

"I was the healthiest when I used to drink, smoked and ate all that junk, the moment

I stopped I got every disease possible" but his spirits are high and there is no day that

he doesn't make me laugh. He is a great dad.



#9 tiouki

tiouki

    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 November 2011 - 03:15 AM

Hi Dina,

Glad to here you are doing well ,

I think that your situation is not that unusual, 2nd generation TKIs cause generally less side effects than gleevec for most people.

I am under sprycel for 3,5 months and have had no side effects at all, except for the low blood counts for the first weeks which is normal (I am 22).

About mental Tasigna is really effective so I hope that your first PCR/blood marrow results will be great and will make you fell better.

I think that if you have not experienced any side effects (except for the dry skin) you should not get anything  more tough in the future (usually side effects tend to decrease within time)

Good luck !

Pierre



#10 Dina

Dina

    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 November 2011 - 10:51 AM

Hi Pierre,

Thank you for your comment and I'm so glad to hear that you don't have any major side effects as well.

Wow you are only 22. When I was dx I used to think why me at this young age(I'm 36) but I'm an old woman

compared to your age. I can't believe they used to call CML "an old men disease".

Wish you all the best Dina.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users