10 replies to this topic

[Tedsey]

Despite my painful mouth sores, in every other physical way, I have been feeling very good since starting Sprycel (9 months ago).  I even ran with my son half a block two days in a row.  I have had severe anemia and I am not really supposed to do this (doctor's orders), but I felt if I didn't get some real exercise, I would explode.  I felt fine afterward, but it wasn't much of a workout.  This has been so hard on me because I have never been a sedentary person.  Anyway, although it has been 18 months and my blood counts remain low and no real great leaps in my PCR (except it gets lower little by little---I am a turtle), I still feel good.  I was just wondering if this is a good sign or an absolute nothing.  I never felt sick when I was dx with WBC at 180,000.  Any thoughts?

Also, is there anyone out there who has been living with low RBC (around 6-7), WBC (in the 1s), ANC (around 1.0), and PLT (below 50K) for years?  I am a little panicked to think I am living on borrowed time.  I have been acting crazy and buying cute clothes and shoes for my kids and me to look nice with the idea in the back of my mind that I will have only so much time to enjoy them.  I have also been clearing out the old, so I have minimal stuff.  It seems to somewhat keep my mind off of this.

Teds    

[Susan61]

Hi Tedsey:  I have not talked with you in quite sometime, but when I think back to about a year ago and how you were then compared to now.  I think your doing better.  Keep trying to do things, but do not get frustrated when you can't.  My WBC runs around 3, and so does my RBC.  I get fatigued sometimes, and then other days I can feel some energy.  I have been on Gleevec since Oct. of 2000, therefore, I can not compare what your feeling with the Sprycel.

I just know as time went on, I felt I could do more after I got used to the Gleevec and its side effects.  I have had other problems this past year that knocked me for a loop, like a huge blood clot in my right leg.  Thought it was Arthritis pain for over a year before they found it.  I feel so blessed that it just sat there without moving to my lung or heart.  I am on blood thinners now, and get rechecked in Aug.

     I do not know why things happen the way they do, but if you stop and think about where you are now compared to where you were it seems better to me.

     You are so encouraging to everyone else on here no matter what your feeling like, and I admire you for that.

     Think positive about all the cute things you will buy next year at this time, and then you will remember what I just said.  I am cleaning out closets and bagging up stuff to drop off in one of the bins for the needy, not because I think I am leaving or anything.  I just want my house in order.  When I get that fatigue, I just rest.  I learned that all my  housework etc. will still be waiting for me when I feel I can tackle it.

[Trey]

Given what you have been through, and the issues you have endured, it is a very good sign.  Execise may even help improve your condition.

[lehrerin]

Tedsey,  Seems like your body is adjusting to a "new" set of normals---lower than most of us, but still normal for you.   I shudder to think how competitive you would be with a hemoglobin of 12-13, and a normal RBC count.    I think we need a day at the zoo......Tuesday-Wed-or Thursday.  We can even do the dolphin show and take the tram:)   We are slowly creeping downward, too,  VERY SLOWLY.   Next test is June 1 (moved up do to a change in insurance plans that will happen on July 1).....

We're going to the zoo, zoo, zoo, you can come too, too, too (I luff Raffi).

Your IBF,  Susie and K.

[simone4]

Tedsey, as long as you are not getting rid of all your possessions, I

think you are in a good place.  Any form of exercise makes me feel

better and I'm not talking about "working out", just fun stuff like you

did yesterday with your son.  I walk a mile every morning to feed my

feral cat colonies. Nothing can stop me. Even the ice we had this

winter. They ask very little from me but it makes me feel better that

I have this purpose. I am so glad you are having better days. It

helps that it is summer, doesn't it?  I had my first Georgia peach

yesterday and it was perfect. Wish I could send some your way.

Take care.  I think of you often and wish you only the best.

Simone

[GerryL]

Hi Teds

You've been coping with a bit more than most of us - and you've been doing it with great courage. I think you are a turtle, but remember that turtles get there in the end and live a long time. Feeling better within yourself is certainly going to help - keep doing the things you enjoy.

Gerry

[rct]

No, it doesn't.  Mrs just got back umpteenth PCRu while three years of neutropenia approaches.  Every fiber, bone, and muscle in her body has not stopped hurting for a very long time now.  The docs are taking wild a$$ guesses now, pushing the neupogen out further and further.  I guess that's good.  Can't change drugs, she hasn't been without the grower for far too long to risk that, so the hope is get her off the shots long enough to try another TKI for long enough to see if it makes a difference.

"You're doing GREAT!!!".  Would love a nickel for each time she's heard that, so I could pay someone to do the gardening that used to be her pride and joy that her body won't let her stoop down to do anymore.  Most are looking forward to retiring to garden, she isn't even 50 yet and can't already.  So no, feeling good in our case has nothing to do with "better".

rct

[Tedsey]

Thanks everyone for your support.  It really, really helps.  I don't know what I would do without this board.  Talking to all of you keeps me from getting too depressed and helps me want to keep on going.  I am not getting rid of everything yet, I have too much of a tendency to be a hoarder, especially baby clothes.  I just cannot seem to get rid of those.

rct,

Well, it may have nothing to do with getting better, but I'll try to hold on to "things are not getting any worse".  I think about your wife a lot and I always have good wishes for her.  I can relate to her QOL issues as I sit here with a new and gaping hole in my mouth.  My motto is, "It is better than being dead."  So, it helps me endure.  It also keeps me thin (hee, hee---not so funny, I guess...).  It's curious how "You are doing great!" (which I could only hope that I hear one day from my onc's mouth) sounds like mockery.  In my world it is the same as "You look greeeeeeat!"  or "How are you feeeeeeeling?"  It is very complicated to respond actually.  But I understand that no one really wants to hear when I am feeling like crap.  They only ask because they want to come across as concerned, (it is so cliche and thoughtless to ask this of a cancer patient---if you are not suffering at the moment physically, you are probably mentally to some degree).  They have no idea how annoying and insincere they sound, especially when you see them once a year at some obligitory social event that draws you together.

leherein & K,

A day at the zoo sounds splendid!  And I doubt if I could ever run circles around you, even if I were at 100%!

All the best to all of you,

Teds

[SunNsand]

Tedsey, if running 1/2 a block makes you feel good, go for it.

I'm all into the downsizing too. For me it's all about making my life easier, less knick knacks to dust, throwing out stuff we do not use, more organizing in the cupboards etc. I have to say it's kinda hard getting my hubby trained after 30+ yrs., we will see if old dogs can learn new tricks ha!

Take care

SunNsand

[TroyLynn]

Tedsey,

I needed to tell you thank you for all your posts, I have the anemia, tiredness,etc. (I actually start Sprycel today, because I lost response to Gleevec)  I have learned so much from the questions and comments you contribute here and I hope you continue to feel and be well.  Run, Tedsey,  run : )  Take care, -Troy-