18 replies to this topic

[hannibellemo]

This is the week that I tend to have an enlarged spleen, increased WBC and platelets and anything else that could possible indicate to my over active imagination that I have not only lost all response but that I am certainly doomed!

Other than vast quantities of alcohol and other drugs (AODs) how do you all survive the week prior to the "big test"?

Pat

[CallMeLucky]

"Idle hands are the devil's tools"!

I try to keep as busy as possible to distract myself from it.  Come up with some kind of project, get out of the house, do something that will keep your mind off it.  And when you do think about it, try to keep telling yourself that the odds are in your favor.  Don't let your mind wander off too much with fantasy thought about all kinds of crazy what ifs, remember that negative thoughts beget negative feelings.  I'm not saying walk around in a fog thinking of rainbows and lollipops, just don't let yourself start thinking about all kinds of things that will likely never happen.  And when you do, because you will, try to remember that no matter how much time and energy you spend thinking about it, it is not going to make one bit of difference to the outcome of your test results.  If your tests are bad you wil be disappointed whether you worry or not, if they are good, which they probably will be, then you will have worried for nothing, so why worry?  I know, easier said then done!!!!

Try to keep busy and stay objective as much as you can and when you feel like you're cracking come here for support

[PhilB]

I'd love to help, but you've already ruled out my principal coping strategy - vast quantities of alcohol.  If anyone does have a good solution then we'll bottle it and make a fortune.

I was really lucky this time around in that my onc phoned me a week earlier than expected so I missed the worst of it - although I did get 30 seconds of 'OMG!  She's called early - and late in the evening!! The results must be dreadful!!!  I'm gonna die!!!!  Before she stopped making small talk and got to the sodding point and told me that the numbers were fine.

Seriously, the only real solution is to do whatever it takes to get your mind off it.  Have friends round for dinner, go do something exciting in the outdoors, go to the theatre, start a fight in your local bar, try to spray paint every cat in the neighbourhood purple.  Anything you can think of that keeps you too busy to fret and leaves you tired enough to sleep.  Choose whatever floats your boat, but as a general guideline you probably won't have time to worry about CML if you're being chased by the Police.

All best wishes for as painless a wait as possible - and of course great results.

Phil

[sandimartini47]

Pat,

Basically I don't survive having all of the same feelings that you do the week before my pcr results.  My husband has the same concerns.  Feeling anxious, falling apart, and a  little crazy--you are in the right place.    Many of us have the same feelings--just hang in there and the good results will be in soon; keep telling yourself how lucky we are to have gleevec, sprycel and  tasigna,  sandi

[GerryL]

Hi Pat,

Probably sounds a bit strange, but I can't wait till I get to have my next BMB and have hopefully moved along a bit further.

If it is going to be worse, I figure it is not worth worrying about till I get the results, I don't need the indigestion and sleepless nights. I'll be spinning out enough if that happens, after the fact. But then again I don't get to see my doc until the end of May, and haven't been booked in for a BMB yet - so maybe I'm still seeing rainbows and lollipops

Now I've got the song "Sunshine, Lollipops and Rainbows" by Lesley Gore going round in my head.

[gunner]

I'm waiting for results right now. I usually cope by taking it out on my boss, his boss, our HR rep, and any other horse's patoot that needs it. I figure it is a free pass for ten days or so. I also told my onc that I want PCR tests every 3 months, even though she suggested moving them to 6 months. My sample should have gone through Mayo last week, so at least the machine should have been plugged back in and dusted off for you!

[Tedsey]

Dear Pat,

Although it probably works well to be in a drunken state until the results come in, too much alcohol couldn't be so great for your liver, or if you want to drive your car.  A bit o' Xanax works pretty well and the effects are not as sloppy.  I think you have put in your time, but if you could rent some wild toddlers in their terrible 2s, and a few whiners, it works pretty well.  Little time to worry when trying to prevent them from killing themselves (or killing them).  Just kidding, but if you like them (or hate them), little kids are good diversion.  My next PCR is in April.  We are leaving for vacation right after.  I think 13 hours on a plane with the kids and going to a country where they don't speak English is going to be a great diversion.  I may even forget that I have CML (hope I remember to take my pill).  If you can swing it, how about a great adventure somewhere?  If you could sit yourself near a crying baby or a toddler who keeps kicking your seat through the entire flight, that would guarantee at least hours of PCR-free worry.  If only we could forget we had CML for just a day...  I am afraid that being unconscious may be the only sure-fire way to not get caught up in this emotionally.  But having achieved MMR for a while now, I could only guess that the probability of your numbers significantly increasing would be low.  Wouldn't it be great if we could successfully convince ourselves to get all excited for a chance at PCRu instead of going to the dark side every time?

Wishing low numbers or PCRu your way!  We all understand what you are going through.

Teds

[hannibellemo]

Thank you all for your ideas and thoughts. One more day to go and I will be in Des Moines for a meeting tomorrow so that will keep my mind occupied and if not - there is always... Angry Birds!

After the test, I'll be fine - it wouldn't bother me if I never got the call...denial is definitely not a river in Egypt!

Pat

[Trey]

Hannibellemo, Queen of Denial.

Her Royal Majesty's theme song:

http://www.youtube.c...h?v=wwGVDmEsi8A

For your further entertainment:

http://www.youtube.c...feature=related

[janekaye]

Hi Pat,

Personally, I think vast amounts of alcohol is the answer, but I can't speak for others who now refrain from any drinking while taking TKIs.  My onc has yet to tell me to stop my beer, and therefore, my motivation to do so is quite low (as long as liver and kidney counts remain normal, of course).

I know just how you feel, and I'm sure we all feel your pain in different ways.  Ironically, I have found that after more than two years, I am not as uptight as I used to be.  It sounds as if you've been doing really well on the Sprycel, and so I think there's every expectation that you'll see good numbers.  How can you not, with so many of us pulling for you??!!

I also listened really carefully to some of the things Dr. Cortes told me when I saw him in Houston last month.  One of them was that it's really not a big deal if your counts fluctuate now and then.  I just "returned" from a 3-week Sprycel vacation and restarted 50mg of Sprycel today (an effort to clear up pleural effusions which actually I had just taught myself to live with, but he didn't like them at all, even at a low-moderate level).  I asked him what would happen to my counts with that much time off the drug.  He said they might go up a little, but that I should not worry.  My body would take over and make the appropriate adjustment.  I am VERY close to PCRU, but still not there after 2 1/2 years.  Again,he said not to worry - I might not ever be there and still do fine and have a normal lifespan.

I think I worry a lot more about my other counts - RBC, WBC, platelets, hemoglobin, AST, ALT, Creatanine, BUN, etc. because these seem to play such an important part in how you actually FEEL.  As all of my oncs have told me, once you get to the lows PCRs, it is not the CML that's making you feel bad, but it's either the side effects or something reflected in the counts (i.e., anemia, frequent infections, etc.)

Enough said.  Good luck to you --- I'm sure the counts will be great.  Please let us know so we celebrate with you!!!!!!!!

-janekaye

[TeddyB]

I have my 6month pcr and bmb on the coming Wednesday, and i did actually have some vast amounts of alcohol (a bottle of wine and a few beers) last night, but i can promise you that even though i felt great last night, it doesnt help much today

I am not looking forward to today`s dose of Gleevec to say the least, but i will manage

[Antilogical]

TeddyB - Oh so sorry to hear about your discomfort, but we must pay the piper, yes?  I can help.  While you suffer the consequences of last night's celebration, I will raise an extra glass for you.  (Oh, think nothing of it - I'm happy to help.)

Meanwhile - there was a mix-up at my 6 month test, & they didn't do a pcr.  I will be on pins-&-needles till December.  My next bmb is at the 1-year mark next February.

[GerryL]

Hi TeddyB,

Hopefully will be the last BMB you require.

[TeddyB]

Thank you Antilogical, enjoy your extra glass you deserve it

Sorry to hear about the mix up, stuff like that shouldnt happen, but unfortunately it does. I havent received my 3month BMB results yet either, and im pretty sure they are missing. (Probably because i had mine in the middle of summer vacation, and there were probably a lot of temps at the hospital those weeks) My onc told me only to call him to get the pcr results, so i had to wait an extra week to get those as well cause he had vacation the week after my test. He said there are a lot of temps and students there during summer vacation, and they might read the wrong results to me over the phone.

Anyway, cheers and enjoy your extra glass

[TeddyB]

I hope so too GerryL, but i think bmb at Dx, 3month, 6month, 12month are the standards here in Norway, and im pretty sure i have to do all of them. Maybe if im ccyr on this test i can avoid the last one at 12months, i wouldnt mind

[beverly]

Love your response to this I will take from this as well ..Cheer up man and listen to him..

[TeddyB]

Billie: Arse is feeling much better today, thank you

Hope you and your husband are doing well.

Teddy