3 replies to this topic

[LLawrence]

I'm 9 months into therapy, responding well to the tki.  I have realized that each time I have a follow up appointment I am shell shocked.  How long does it take for our psyche to catch up with the reality that this is a treatable disease?

[CallMeLucky]

After a year or so I felt better, then I got a result I didn't like and it sent me into a tail spin.  I think it just depends on so many different things like how you are responding, how you are feeling physically and what type of personality you have.  Some people obsess over a .001% change in PCR, others walk around with positive but stable FISH and think "whatever, as long as it holds". 

At almost three years I am a lot better about my situation but it still rattles me sometimes.  Although I will say that while it may be a false sense of security, for the most part I have convinced myself that CML is not going to kill me.......

[Susan61]

Hi:  It depends on the person I guess.  I still get anxious until the doctor gives me my results every time i get my blood drawn. I think its just normal to feel like this.  CML is a very treatable disease, but we like to be sure its still going in the right direction no matter how long we have had the disease or how we are doing on our TKI's.

     I am due for my PCR test in July, and I am sure I will not relax till I get those results at my appointment.

    Like Lucky said, after your living with all this for awhile it does get better.   You will start to feel better when you see how much time has gone by, and your still okay.

Susan

[pamsouth]

Hi LLawerence.

I have been on Gleevec since 2005.  I thought I was PCRU for 6 years until I changed Specilist and labs.  The CML specilist at I.U. says I could not have been PCRU and still have had a dedectible Fish.  My labs were sent from Indiana to N.J, than when the Lab changed over to the International scale, the PCR went up significally.  So I changed over to Indiana University where they do their own PCR & FISH.   I have had labs at Indiana University for a 1 1/2 YEAR now about every 3 months.  I think it would be a fair statement to say I have been in CCYR or Stable Fish average of 1% to 7% for 8 years, and I am exstremely happy with that!!!.  I am not at home to look at my labs, but I think that would be fairly accurate.  A couple of years ago my heart rhythm got out of whack ,  I think due to the stress of taking care of my sick husband.  Turned out he was having an allergic reaction to an arthritis pill and they just kept giving him more pills.  Weaned him off of pills and got him in Physical Therapy.  Outside of arthritis and a bad shoulder he is doing well and working part time at age 71.  Sorry to get off track.  Went to Jenny Craig last Dec and I have last 35 lbs, feeling much better.  Have been down here in Florida since May 5th and am loving ever minute.   Currently am in St Augustine on the little Island of  Anastasia, for two weeks.  Fatastic weather, breath taking luncheon sittiing on the patio with ocean view.  Lost another 5 lbs.  Have an old school friend that lives here haven't seen her in over 47 years, so we are having some good catch up talks and great memories.  However she has been on dialysis for a year, was born with only 1 functioning kidney.  She has a kidney doner and hopefully if all goes well she will get the kidney transplant in Aug or Sept.  I feel fortunate after seeing what she goes thru, it is not plesant.  But if the kidney transplant goes well she should be good as new, except for taking anti rejection pills.

Can't believe the active senior's that are my age, they look amazing.  Atmosphere a little like southern hospitality.  Looking at the senior ladies around my age 65 years, playing tennis in their little tennis outfits and looking fit as a fiddle.  Great playing tennis and exercises in the pool with the tropical ocean breeze and the Tiki entertainment with lots of laughter.  Just saying attitute and enviorement do a lot for the soul/spirit/ and immune system.  Give you a wellness/whole feeling.  Had a massage yesterday morning after my mile run.  (ran 2 1/2 miles this morning) Massage Therapist has studied in Hawaii & Palm Beach and various places.  Amazing techniques that I have never heard of from up north.  Felt like he open up my whole spine, muscular skelton, from head to toe, with out a lot of deep tissue, all in the technique.  He also open up the thoraze I beleive you call it, right down the rib cage.  Amazing.  Another one to try is lay down on your back and ground your heels slightly into the bed (1/2 in) and your head slightly into the bed, and you can feel you skelton line up, from your head to your toes.   If I could just have another good, happy, qulaity of life for say 10 years, down here in the sun shine, I would die one happy person.

PamSouth