21 replies to this topic

[Foxgal]

Hi Everyone--I have very recently been diagnosed with PH+ CML--and just started on Gleevec. I am really fighting fatigue right now--does this get better with time and does your body ever get "adjusted" to the medication?

[Ludwigh]

Howdy and welcome to this unfortunate club yet super hopeful. I've been on 600 mg for almost a year and tolerate it pretty well. Everyone experiences it differently, some with greater side effects, some less. It does get better over time. You'll find some of the most helpful and understanding people in the world on here. If you do experiece something and have a concern than chances are someone else in these boards have experienced it as well and will share.

Terry

[Coop]

Keep that attitude!!!   Many people do experience G and the whole CML experiance in various ways, although there are some similar things that we all seem to have to some degree....Trey here is great for advise or info on most anything concerning numbers and explanations of results your doc may not have enough time to explain.. you may run across some "emotional issues" that i think only those of us with CML may really understand...so don't be afraid to vent to us..many probably know exactly what your talking about...just to cover a couple frequent issues...when your numbers start to get much better..even PCRU, friends and family may not understand why you don't run marathons and play hula hoop!! YOUR in remission for petes sake!!! but as with myself and many others, i had alot of depression issues throughout using G and you still might not feel well...that for me was a hard one....Brain fog another...but on the other hand always remember..those poor CML patients of yesteryear lived a short hard life...we are very lucky, and we HAVE to keep that in mind. Many folks do just fine on Gleevec in mood and health!! so hopefully you will be one of those..

But honestly...we are all here as a family, for support when no one else understands, if you come here once a month or everyday, there is always a good ear to listen and a shoulder to cry on.

[Foxgal]

Thanks for the welcome, it really means a lot to have a place to come to ask questions and share experiences with people who truly understand!

[Foxgal]

Thanks for the welcome Coop. I am glad you brought up the emotional issues--when I first heard the diagnosis I was really "tough" and had the "hey no problem" attitude. It wasnt until I started the medication that it all became "real".  I do have a very positive attitude and always have throughout my life--so sometimes when I feel down I am a little tough on myself  saying hey stop whining--it could be a lot worse.  I am really thankful that I am able to come here and communicate with people who truly "get it"  I have never been very good at showing or sharing my feelings but I realize that I can't do this alone---thanks again to all of you for being here!

[tinac21]

Hello, welcome to the "club", so glad you have such a possitive outlook in the begining that really makes a difference. I've been a patient for 6years, I know of another member who has been for over 10years. It does get better in time, the only times I am reminded of cancer is when I see my onc. My biggest issue is finding other doctors who will actually treat me for the common cold with out reffereing me back to my onc! lol. Even my gyn wont perscribe me birthcontrol, I have to go threw my onc for that as well. Its annoying at times. This is a great place and I hope you enjoy sharing your good and bad here with everyone. This is a wonderful group of people who really do care.

Tina

6 years strong

[Foxgal]

Hi Tina--nice meeting you. Thanks for the encouraging words--6 years strong--thats great! Its nice to know that things get better with time. Right now I am fighting fatigue and some bone pain but its manageable. I think my biggest concern right now is that sometimes I just get really moody for no reason--just out of the blue I get sad or really ticked off--lol! That is so not me, I am usually a really easy going carefree kind of gal. I am sure that this will pass too, at least I hope so cause I dont even like me at the moment!!  Once again thanks for the encouragement--I have felt so welcomed to this site and I am proud to have become a part of this big family.

[td1961]

Hello there. I've been living with CML for six years also. I think the anger that you feel is common to allot of cancer patients. Maybe its the indignation of the realization that there is really nothing you can do about it? Or maybe its the general feeling of illness? Its hard to be happy when you have a side effect like cramps nagging at you! I just try to get as many laughs throughout my day as possible. Laughing is good both phyiscally and mentally. Little pain killers go into action everytime we laugh. I know CML is no laughing matter but anything we can do to take our minds off it is going to reduce the stress caused by the disease. Best Regards, Tracy

[MomMom]

Welcome.  You've come to the right place for support and encouragement.  My dx was  July 2008 and I am doing well.  Just dealing with side effects and planning for the future.  CML does not have to stop your life in it's tracks.  I still work full time, have taken several trips this past year including one to Great Britain this past summer for two weeks, and I am planning another one to Colorado and also one to New England.  Retirement is in my future, but boy howdy do I have plans for that.  I have three grown children and 7 grands from 17 down to 3 and I can still keep up with them (most of the time).  When those down times come and they will, just take 'em and move on after your going again. It's not a picnic in the park, but it is doable.

My 99 year old grandmother has always told me when you stop doing, moving and going, it's over.  Well, she's still here, so I guess she's got a point.

Vent to us, question, and rejoice in the good times.

MomMom

[Foxgal]

Hey Tracy--I think you just nailed it--lol---I am somewhat of a control freak (not to others just myself) and the fact that this thing had the nerve to invade me is just not something I was prepared for--but with that I have the attitude that I am going to kick this dirtbag!! Thanks for understanding!   Tammy

[Foxgal]

Hi MomMom--its great that you have only been dx for a little over a year and you are doing so well---that gives me lots of hope!  I love to travel as well--hope to get a trip in sometime this fall, its my favorite time of year.  I love your grandmothers attitude. My granny was 94 when she passed and had the same attitude--she was a hoot. Right up until a few months before she passed we would go on all day shopping outings--quite the fashionista even at that age.  I was going through her things one day and found her K2 "survival box"  it contained hair dye and lipstick---I laughed for hours!!!  I am so blessed to have found this site--all of you make the "down" days a little brighter............Tammy

[MomMom]

Then you will understand that my granny is in a care facility but dresses everyday and wears her 'good' jewelry to bed, carries a Brighton hand bag, gets her hair and nails done and still tells me when she thinks I need a haircut and my sister's hair color is too dark!  Talk about keeping up appearances!  Don't you just love it?

MomMom (but you can call me Kay)

[Foxgal]

Oh my gosh Kay, our grannies must be related some way!  I absolutely love it and I want to be the same way--and hey I am all for wearing your "good" jewelry to bed!

Tammy

[Coop]

hello again, well i really do not want this message to be a downer, but rather a "heads up" post. I was always a "glass half full" guy all my life and really felt i was the rock for many of my friends and family. but after starting Gleevec i went through a very serious period of depression. I have done my own research over the years by reading post from others and have found that many folks seemed to have more depression on Gleevec, its not listed as a side effect although i for one feel it can be. Being aware of it can help you understand it if it does happen to you. I went on feel good pills and did pretty well. Like a said before...i don't want you to think this WILL happen, but if it does....you might be able to identify it early...one good thing that came out of it..i felt i nolonger had the strength to carry others on my back emotionally and had to give up my strong role .MAN was that liberating!!

DX nov. 04

[Foxgal]

Hey Coop--always glad to hear from you!  I completely understand what you are saying--I have been the rock, the "go to girl" and the glue that has held many things together over the years. I think its just a big change for me to have people treating me like I am fragile now. Friends, even though they mean well and are sincere have that "look" when they talk to me--like pity or something and I cannot stand that!!!  But at the same time I have to agree with you, when you decide you can no longer carry the load of others it is liberating. I have promised myself that it is time to take care of me, think of me and make myself happy!!  I feel that some mild depression has kicked in already, be it the medicine or just the dx or both. Thanks for letting me know that I am not the only one this has happened to and that it is fixable. I am kind of at a place right now where I miss "me", I am usually a happy, funny, ornery rotten gal who loves to laugh and have fun. I just feel kind of muted and for lack of a better word "blah" I am trying not to let myself slip further into the "darkness."  Its a beautiful day here in good ole West Virginia so I am planning on going for a short hike and enjoying natures beauty--cool crisp autumn air on your face can do a lot for the soul!  Keep in touch Coop--I am wishing you well and sending healing thoughts your way!!!

[td1961]

Tammy, it's easy to get down in the dumps and dwell on the CML. I know, I went through the mourning process (if you like) when I was first dx'd. I participated in allot of support boards like this one that helped allot. After about a year, when my numbers were getting better and I knew I was going to LIVE normally (well, as normally as a CML'er can!) I began to let go bit. I'd go days and even weeks without even thinking about my CML. Heck, my friends got to the point where they didn't even remember because I wasn't dwelling on it so niether were they. Can gleevec cause depression? Maybe? Or maybe it's just the thought of the cancer and what coulda shoulda woulda happened if I didn't have the damn disease! My hobbies really helped out allot! I like to do my ham radio stuff which is a great diversion. I like to play my bluegrass banjo and guitar too. The hand cramps sometimes dictate how long I can play but sometimes I push it just show them who's boss! I believe that you need to do anything you like to get your mind off of the CML and back on LIFE. Comedy helps. Whatever you like to do to keep your mind off the beast! Just my two cents worth! Hope you have a good hike. I bet the leaves are turning real pretty this time of year!

BTW, are you on facebook by chance? I found that re-starting old friendships is a great way to pass the time. Best wishes, Tracy

[MomMom]

DITTO! Coop. It has been liberating and my grown up children are finally grown up. I let go, too. Can't be all things to all people.

Kay

[Foxgal]

Hey Tracy your two cents worth is always welcome--heck you can even give me your quarters worth if ya like lol! I appreciate all you "veterans" taking me under your wing. I take it all in!

[Coop]

I know this is trivial....but i grew up in WEST by god Virginia.  lived on the west central side of the state...little town called Buffalo. I live in the desert southwest now, New Mexico, sure missed climbing trees and playing in the creek when we moved out here when i was about thirteen.

[Foxgal]

Hey Jeff, A fellow mountaineer--cool!  I was born in WV and lived here until I graduated from high school. Then went off to Minneapolis to the U of M, worked at Hennepin County Medical Center for a lot of years and just recently moved back to WV.  I miss the Cities sometimes but I think once a West Virginian, always a West Virginian-- it stays in your blood.

Tammy