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Count down to next appt and all the BS that comes with it


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#1 CallMeLucky

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Posted 03 March 2011 - 03:04 PM

It's kind of like clock work, I'm about 2 weeks out from my next appt (FISH/PCR test) and I can already tell that without really thinking about it, it is already starting to effect me.  I guess it is good that I realize it, but it is frustrating.  I started to notice it the other day when I randomly started having thoughts about what it would be like for my kids to grow up without me.  I stopped myself part way into the thought and tried to backup to figure out what brought it on.  Why was I suddenly going "there".  I recognize what it is but I have noticed it progresses a little each day with more and more negative thoughts.  I catch it pretty quick now and try to distract myself, but each time they are a little more intrusive.  This morning I found myself thinking about making a video that people could watch at my funeral, kind of a "message from beyond".  What the hell is that all about?  When did I become such a lunatic?  Who thinks about things like that?  I guess people with cancer do, at least some do, sometimes.

I'm trying to keep a good sense of humor about it and try to laugh at myself when I catch myself doing it, telling myself it's just in my head and to let it go and try to think about something else.  It doesn't help though when there are odd physical things going on.  I am trying to figure out if I have something to be concerned about, if it is a psychosomatic symptom, or if I just did something to myself unrelated to CML.  It started yesterday with some pain in my lower left abdomen.  Right away I started thinking spleen.  It doesn't really make sense and when I feel it, I don't really feel anything that feels swollen, but I just feel like there is something inside that doesn't feel/fit right.  I may have aggravated it trying to do some abdominal exercises the other day, I clearly have a pulled muscle, but that is higher up and I know what that feels like, this feels like it is coming from inside.

It doesn't make much sense because there is no good reason why I should have an enlarged spleen.  I have been doing well on Gleevec 400mg for about 8 months now and there should be no reason to suspect anything has changed.  I think I got a little weirded out last week when I went to the doctor for dizziness, he said it was vertigo, but at my onc's request they ran a baseline CBC.  My oncs office called me to tell me the CBC looked good, in fact it was almost too good.  All counts were normal and my WBC was up in the 5's and my platelets were just under 200.  Certainly normal numbers but higher than they have been since I started treatment and with so many people always talking about low counts being the new normal, it started to make me wonder, is this the first sign of things starting to go up, am I losing my response?  I'm still bothered that my last PCR went from .25 to .375, although my FISH went down to almost zero and the two PCR numbers were from different tests (BM vs PB).  Still As my test date approaches and I have this pain in my abdomen, my mind is wandering all over the place.  So frustrating.  I wish the pain would let up so I could just get back to dealing with imaginary stuff in my head; that's usually sufficient to drive me crazy.  The added pressure of the belly pain is just making it that much worse.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#2 janner25

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Posted 03 March 2011 - 04:19 PM

Hey Lucky~

I got nothing to help ....just positive thoughts for you.  For what it's worth, my CBC has been in the 5's and started creeping up to high 8s...but again, I've had a sinus infection pretty much all winter... so who knows what the cbc will be when I'm not fighting anything else but the CML.

I am feeling anxious as well - 2nd opinion is Monday.  Will they do my first BMB, will it just be talk, what will I come out of there learning.  I think with CML, in the short time I've had it, you go through cyclical phases and it makes you go crazy!!!!  And having those thoughts are natural (especially when someone tells you - the counts look good) because all we have is the faith that everything will work out the way it is supposed to - and we will get and stay in remission.  Having the boys too makes it hard because you see them - and want to be there - and it's scary as hell to know that if things change that there is a possibility of the bad stuff that we try not to think about.  I go through all the thoughts too.  And my response to the TKIs has been great - but the thoughts still creep in because we're fighting - and will continue to fight for the rest of our lives - cancer.

Since you normally give me words of encouragement (as well as lots of others on this board), thought I'd just say - I'm thinking of ya!



#3 Skittles

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Posted 03 March 2011 - 05:10 PM

Lucky,

I think the way  your mind acts is perfectly normal for a cmler.  Remember that this is still fairly new to most of us and we can all remember that dreaded day we were given the diagnosis of CML.  I have been MMR for a year now (thankfully) and though I do not get anxious when an appointment or  test is due I do get anxious if the results aren't back to me fairly quickly.  My test results come by mail and usually are here within 10 days but if it goes over that I start the 'what if's' every time. I start to notice the hip and thigh pain I think should not be bothering me by now etc.  I guess I am a delayed worrier since my nervousness comes about 2 weeks after the appt. but nonetheless I believe we all get anxious at some point and we are entitled to that.  That being said I also want to offer my words of encouragement to you.  I hope the pain is a pulled muscle and that everything is fine.  Best Wishes, Skittles



#4 Marnie

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Posted 03 March 2011 - 09:05 PM

Hey, Lucky. . .I think we're all a little bit on the crazy side sometimes.  I seem to have gone the opposite direction, which amazes me.  Since starting Sprycel I've gotten less worried about PCR number and all that jazz.  I just hope that when I finally get my first PCR test post-Sprycel the numbers will be good.  I know that if they aren't lower than I've seen before I'll bounce right back to the world you are in right now.  Always thinking about it, always worrying about it.  I know that I drive my doc crazy because I keep asking him when I'm going to get to that elusive 0.000.

Here's a little humor to take your mind off things.  Just be glad you aren't my neighbor (or at least weren't my neighbor this morning at 5 a.m).  We've lived in this house for 12 years, and when we bought it it had an alarm system installed, but not hooked up to the security company that installed it.  But because it's tied in to our smoke detectors, we can't completely disconnect it.  So this morning, we are jerked out of sleep when suddenly our house explodes into violent siren sounds inside and (much to our chagrin) outside!  Siren blaring, lights flashing!  My husband jumps out of bed naked and runs to the front door.  We discovered 12 years ago when this happened for the first time, that opening the front door deactivates it).  However. . .the siren continues blaring.  I'm trying to get into my robe, but the arm is inside-out and in my sleep-fuzzed brain, I can't figure out how to get the damned thing right so that I can clothe myself before running all over the house.  All of the lights in the neighboring houses start going on as folks are trying to figure out what the hell is happening in the neighborhood.  My husband runs to the basement (yes. . a captivating sight in his birthday suit. . .I take a quick moment to savor it) to pull the plug, but then he realizes that it's a plug that needs to be unscrewed, so he yells at me to get a screwdriver (more lights in the neighborhood going on, people opening their front doors and peering out into the early morning gloom).  I grab a phillips-head from the tool chest in the garage and toss it down the basement stairs.  A few moments later he yells up that he needs a flat-head.  Finally, he pulls the plug, the sound stops, we peek out the windows and hope that no one knows that it was our house blatting out the alarm. 

End of story. . .nothing else exciting happened today. . .but did I at least take your mind off of things for a couple of minutes??

Marnie



#5 everonward

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Posted 04 March 2011 - 03:47 AM

Hi

I think we all get a little crazy near results time. I had my latest PCR drawn on 22nd Feb so will e-mail my CML clinic nurse to see if the results are in on Monday. As the weather is fine but chilly here I shall distract myself by tidying the garden, planting my carrots, shallots, garlic and possibly a few other early seeds and baking.

Try not to worry - it will be ok. BTW my results from blood and BMB are always different too.

Marian



#6 MJL

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Posted 04 March 2011 - 04:22 AM

You are not alone in having those strange thoughts and concerns. I bet most of us CMLrs do. Every little ache, pain, funny feeling,twinge or whatever makes us wonder if it is just"one of those" things or related to our CML. I have become increasingly neurotic about every little change or occurance with my body and health since being diagnosed with CML.  And how can we not think of our mortality? We have cancer, we have the drugs to help us but there is always that nagging worry that it will stop doing the job. Good luck with your next appointment. I am saying a prayer for us all.

MJL.



#7 hannibellemo

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Posted 04 March 2011 - 07:30 AM

Lucky,

I can only say that what you go through the week before sounds pretty normal to me, but there are some people (person) on here who would question that normalcy.   Wednesday I had my annual physical and asked for a refill on my Xanax. My GP knows I don't use it much so he asked when I needed it. I told him I used it the week before my big appointments. He thought that was a perfectly good use for the drug. Although from my posts on here a couple of weeks ago I'm not sure how much good it does.

But, to continue with another example of my absurdities, I have been known to walk out the door after an appointment with my local onc who has just done an examination in which he tried to palpate my spleen and couldn't find it and felt a twinge or other sensation in my lower left quadrant! Immediately, I think to myself, "That must be my spleen"

I've come to the conclusion it's because I find it hard to believe my good luck and I don't want to get too cocky and think positively, heaven forfend because that might get the attention of the daemon, Bad Luck!

Such are the perversities of being a human being - at least being this human being.

You'll be fine - good luck!

Pat

P.S. Marnie, I just read your post and I was enthralled. It would only have been better if your husband had run outside in his all together and started bashing the sirens on the house! Now that would have been a picture!


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>


#8 valiantchong

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Posted 04 March 2011 - 09:43 AM

Hi,

It is perfectly human that we have worries..and sometime feel depressed as imaginary went wild...I know it is difficult think positive all the time as human has feeling and emotion. It is normal that some of us will think the small defect of cell in body like a "time bomb" which we could not control and do not know if it will ever detonate. Then again why not think of the other 99.9% parts of our body which is perfectly normal and well.

I wish I could feel positive and hope all the time too...but then again being worried does not help, and will only make us more depressed. I am too trying to get away from this thinking, sometime or most of the time failed....As human I only could try my best to live every moment as it is... as worried will bring nothing but sadness and will not help... Energy should be put into living the best with every moment... may be one day in future a cure was found and look back and think energy and time was wasted on the worried that not realized. Why not live and try the very best to live and enjoy the present moment rather than to worry on the future that has not come.  



#9 PhilB

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Posted 04 March 2011 - 11:53 AM

Lucky, I think the whole site have been there, done that and are wearing sympathetic T shirts.  It takes a while to get to really believe that once you have a reasonable response level, no 'symptom' can actually be anything to do with the CML (the treatrment yes, the disease no).  You don't feel anything until your counts are off the scale and the disease moves slowly.  Of course the other side of that is that until they do the test you've got no way of knowing what's happening!

I loved your alarm story Marnie - it reminded me of when we bought our first house in London.  A few days after we moved in I happened to be standing right next to the alarm when my wife found the panic button in the master bedroom and thought "I wonder what this button does?"  If I'd jumped any higher I'd have put a hole in the ceiling.  Speaking of holes in ceilings, today seems to be the day for the household demons to pick on us CaMeLs.  We spent five minutes trying to find the source of  a strange buzzing sound in the kitchen this morning, before finally tracking it down to the light fitting over the sink - which was buzzing because it was full of water from a leak in the bathroom above it.  Oops.



#10 CallMeLucky

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Posted 04 March 2011 - 01:34 PM

I want to say thanks to everyone for the support and feedback.  As we all know it changes from day to day.  Today I have been extremely busy at work, so I haven't thought much about it at all.  I am encouraged that each time I seem to handle it a little better, at least by being more aware of it.  As VC put it, there is no point worrying about what may never come.  I have given that advice myself, and it is good advice for all of us.

The abdominal pain seems to be settling down.  I think it was probably most aggrevated by the muscle pull and I have found that if I stop poking myself in the spleen, it doesn't bother me nearly as much (go figure) reminds me of my diagnosis appointment when the doctor's fellow was poking me in the stomach over and over asking if I had any spleen pain.  I told her not until she started poking me in the stomach.  I'm thin as rails, so if I poke my abdomen over the spleen, there isn't too much between my fingers and my spleen.

Thanks again to everyone and Marnie, your story did make me laugh, if it ever happens again, I suggest opening the door and going outside and looking around as confused as everyone else, then if one of your neighbors isn't around, start pointing at their house.

Hope everyone is doing well.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#11 grannyd

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Posted 04 March 2011 - 02:55 PM

I too am a nervous wreck--always!! each week for just my blood work, since i was just diagnosed in january. you was so kind with words for me when i first post on this site, i will keep you in my prayers that all will be fine!!! anxious & worry are my biggest problem, only leave the house now for blood work-- how is that for crazy!!! used to be on the GO GO GO all the time, now too tired to go anywhere!! best of luck!!! granny d



#12 donkatking

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Posted 04 March 2011 - 03:42 PM

Since being told I had CML in February I have too run through the gambut of thoughts about what will happen.  I know on two occasions I just broke down and I cried and I never do anything like that.  Glad that my wife was there with me and I told her how i felt.  I have now finished my first week back at work.  On Monday my doctor's apointment was all positive as my white blood bount had dropped significantly with the Tasigna.  Work so far has been good for me but I'm not gonna push things as hard as I used too.  I have worked while I felt bad before I was diagnosed and I've decided I won't ever do things like that again.   My supervisors have been very positive and they make sure that I now get up and away from my desk on occasions.  Used to I'd sit at my desk all day long and maybe get up for an occassional bathroom break.  I normally work 20 hours overtime every two weeks but right now I'll work enough to have comp time to offset any doctors appointments I may have.  It's gonna be little changes that I think will help me along this journey.  I'm gonna be positive and I will be up front and honest with my onc about what I am feeling.  So far he has been very good about all this with me and I'm very satified with what he has told me.  Oh, I know I will have those down monents and those thought will pop up in my head but I will not let it defeat me.  I have been through alot over the years and this is another bump in the road as far as I am now concerned.  I will follow the instructions that my onc gives me, I will keep informed and I will not let this CML defeat me.  After going through 20 years in the Army, I can and will win this.  So be positive in your approach, think to youself the sun will be there in the morning when you getup, and be yourself.  Keep a smile on your face because when you have a smile it radiates to eveyone around you.  When you have a bad day and need to talk to someone get on this site as I have found these guys the best for helping with good advise.  Your with a good bunch of people here.  As my Onc has told me "You have joined the Mafia"



#13 Susan61

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Posted 04 March 2011 - 11:43 PM

Hi Marnie:  I needed a good laugh, and as far as how everyone feels prior to getting a test done or waiting for results its the same with everyone no matter how long they have been doing it.  You do not have to be new to CML.  Its human instinct to get the jitters and mixed feelings.  Your mind starts to wander all over the place.

     I am having so many other health problems that I cannot even think about my CML.  I am going for a Gallbladder Ultrasound this week, and a complete Cardiology work-up due to stomach pains and nausea etc. etc.    Then I was in the hospital the beginning of Feb. with a blood clot.  They told me I have had it for a very long time due to how huge it is.  Its from my knee all the way down the front of my leg.   It could have gone to my lung or heart during this long time of having it.  I kept saying it was my Arthritis. Feels like I have weights around my ankle when I have to lift my leg.

I will get through it all, and just hope they fix everything soon so I can move onto a new day.  Just praying for some good days with getting my energy back.






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