19 replies to this topic

[Gail's]

So I can't decide if the thought I'm having is illogical, suicidal or just plain nuts. I'm going to try it out on you guys mostly to find out if anyone felt this way and how to keep up the fight. I'm talking to you all about it just to find out how cuckoo I am.

I have been thinking I'm already tired of this feeling tired all the time. I keep having the thought that it would be so nice to just stop the gleevec and not treat the CML at all. It's not a death wish so much as feeling discouraged about this disease, treatment and side effects.

That being out in the open, I want to reassure you that I will be a good little soldier and keep taking gleevec. Guess I'm curious if anyone else has felt or feels like this.

[CallMeLucky]

I thought about it and I think many of us do. I did research and realized that the slow painful death from untreated CML would be way worse than the side effects of Gleevec. Not to take away what you are feeling, I felt it too but for me it was a matter of perspective. So I realized that wasn't an option and I really didn't like the way I felt on Gleevec so I switched drugs. Sprycel hasn't been a party but for me i feel better than I did on Gleevec. So I think if you are going to live with a chronic illness, part of it is being on the best med you can tolerate, working with a sympathetic dr who works with you to make it as tolerable as possible, and learning to accept that some things have changed and I'm just not going to feel the way I used to.

Best of luck, hope you can find some things that work for you.

[JPD]

Of course.  It sucks having the cloud of cancer over your head 24/7.  It sucks having to take toxic chemicals to control, not defeat, that cancer.  The side effects suck. 

 

 

But...

 

 

 

Somewhere in the world right now, someone is writhing on the floor in pain from hunger, someone is in a war zone, someone is breathing their last breaths from a cancer that is NOT treatable. 

 

The default human condition is NOT one of perfect health - that is a very modern and western point of view - its also 100% false.  The thinking that we SHOULD be in perfect health and feel good everyday.  Thats not the way nature works.  You've got CML - so do I.  It sucks donkey balls, but shit could be a lot worse.  Try to get some exercise, pray/mediatate, eat well, and do something nice for yourself.  We get one chance at this life - and we've got cancer - but at least we get to thumb our noses at it by surviving it.

[pammartin]

I took a brief unsanctioned stop from the Sprycel about May 2012, after my diagnosis in Oct 2011. 

 

I blamed everything on the Sprycel.  My oncologist's PA was very good.  She talked to me over the phone and recommended I talk to this professional she sees also.

 

It made a huge difference.  It may have saved my life, I am sure it changed it for the better. 

 

Good luck to you, remember we are all here to listen and support.  Please take care of yourself.

Pam

[Billie Murawski]

Hi Gail,

  What you are feeling is perfectly normal I know I get that way every once in a while. It's so awful just fighting the fatigue and the side-effects day after day. It seems like it would be so much easier to stop treatment and let nature take it's course and finally be rid of all the sadness and heartbreak that life throws at us. You are at a really tough stage in your cml battle  the shock of your dx is over, you probably know as much about cml as you want to and the depression is setting in now. Believe it or not you will perk up. A lot of us take an antidepressant, they really do help you cope better you may need one for just a few months.

  Do you have children or grandchildren or siblings, I'm sure they all love you very much and would be devastated if anything happened to you. But in their eyes yeah mom has cancer but its not really cancer and all she has to do is take a pill a day and she'll live forever & everytime you see someone all they say is you look so healthy you must be feeling really good. Don't you want to punch their lights out?

I wish I could tell you their attitude is going to change but it's not, that's what is so wonderful about this board we do understand. When I start to get resentful I just tell myself these are people I love and I wouldn't wish this on anyone. We just had another holiday and it's so hard on us because we just can't do all the things we used to In my case I had all the holiday dinners I just can't do it anymore and I'm just to tired to go somewhere else for the day. Some people on the board are doing better than us but in my case they are younger than me and because of my other health problems I have to take meds that make me tired also. I want to throw them all out but I don't dare I'm much more afraid of a stroke than I am of dying.

  Are you going to retire soon, I thought you said so. I'm so glad you posted this, we're going to help you and cheer you up Pam recently had quite an experience maybe she'll pm you and tell you about it. I'm sworn to silence because she's embarassed but maybe she'll share it with the board. She has the most bizarre experiences, I'm sure glad I live such a quiet uneventful life.

                                                       PM me anytime                 Billie

[dede5]

I just feel sick and tired of being sick and tired. I've thought many times about just stopping the meds, but for me, fear of the pain plays a big part in my continuing. That, and my family. Glad this was brought out, and to know I'm not the only one, but I know I will continue the fight. Maybe it just helps to know that we have that tiny bit of control left of what was once our lives, should we choose to use it.

[Gail's]

Wow! I'm overwhelmed at all the responses and so glad that I'm not the only one! Thank you, everyone.

Yes, Billie, I have great children and 2 wonderful grand kids. I also am planning to retire. Probably January 2017 so not that long. I'm sad because I've wanted to spend my after retirement time traveling and being busy with the grand kids. Right now, I can hardly manage the 20 miles to my onc office so all the places I wanted to go see seem gone from my prospects. Not to mention getting to spend my traveling $ on TKI co pays.

My family and friends would be furious if they knew I even thought about stopping treatment. I'm just really, really tired. Returned to work half days this week. I drag myself there, then drag myself home to nap for a few hours. Feel a little less tired right around the time I need to take my gleevec. Then I drag myself to bed hoping I won't be up all night with the sharts. Just seems crazy to allow this med to do this to me when I really didn't feel that bad with undiagnosed CML.

[chriskuo]

How are your red blood cell counts? Are you anemic?

 

As my hemoglobin returned to close to normal, I felt much stronger.  And when I switched off Gleevec after a year, I felt stronger too.

[scuba]

Gail - Why not switch drugs and get off Gleevec since it's causing you bad side effects?

[Gail's]

Onc is not real supportive of changing gleevec dose and we haven't discussed new med. I'm so new to this she wants me to ride it out. I agree because I see people have tough side effects but get better with time. I was so sick at first I think I just sat around too much and need to build up my stamina again. But it does feel better more days now.

My red blood count is very good, near normal. Much better than at diagnoses.

Good to have a place to whine though!

[hannibellemo]

Hi, Gail,

 

I have to admit I'm in agreement with your onc. Everyone of these drugs have side effects and with a few exceptions they get better over time IF we hang in there and give them the time.

 

I started on Gleevec and loved it, no major issues other than GI issues that everyone seems to start out with. Then 9 months in my liver takes extreme exception to the drug.

 

Sprycel was a 5 month walk in hell but I did get through to the other side even though there were many days I took the pill with tears in my eyes and wanted to hide under my desk at work in hopes no one could find me. I'm no tougher then anyone else, but I am very pragmatic. I knew if I switched again I was just trading one set of side effects for another. I spent a lot of time whining on here about the side effects and that was very helpful!

 

That is not to say there aren't times we should cut the cord and move on to another TKI to see if our quality of life is better but as long as the drug is working and the side effect, although it may be irritating and uncomfortable, is not life threatening, I personally feel it's better to give it a good length of time to see if things improve.

 

Just my opinion...

[Gail's]

Completely agree with you hannibellemo. I'm just not used to being a total slug. I'm afraid there's going to be a dip in my couch from my rear being on it so much!

[Marnie]

Good to have a place to whine though!

Gail. . .it's always better to have a good wine, rather than a good whine.  Or have both. 

[Dom]

I'm a little late getting on this thread.   I've told my story before, but I think it might help here.  

 

I was in for a cath / stent operation, my third one and my fifth stent (I have a full metal jacket now).  During pre-op they told me I had leukemia -- CML, so at least its treatable.  Then at work, they put me on part-time, then lost insurance (on cobra now), then I was laid off, then I turned 63, and no one wants to hire me.  In addition to Gleevec, I need 8 pills every AM and 8 pills every PM for BP and Cholesterol.

 

Boy, was I a depressed little slug.  But a good friend just informed me he would not let that happen, so we went for walks and conversation every morning.  I Joined a gym, and three times a week I do moderate weights and always end with a 15 minute bike ride.  Everything changed for me.  I can safely say I don't think about cancer at all.  

[Gail's]

Yeah. I figure I need exercise. Some days making it to the coffee pot is hard. It's something I'm just going to have to make a priority. I look forward to the day when I don't think about cancer.

[LivingWellWithCML]

Exercise is a difference-maker for the fatigue.  I have rarely felt any fatigue symptoms from Gleevec (4 years into my journey) and I believe my exercise routine is playing a large part in masking that side effect.  I've also started exploring meditation using a simple iPhone app called 'Insight Timer'.  I'm not really sold that meditation is right for me, but it could be a powerful therapy for others.  My friends have also suggested that I take up Yoga for zero-impact fitness, so that could also be an option for fighting the fatigue.

 

Others have experimented with the time-of-day for the Gleevec dose.  I have always been a breakfast-dosage person, but some take Gleevec before bed to 'sleep off' some of the side effects.  It's a pretty safe experiment to try, but make sure you always take your dose with some food (regardless of the time).

 

Either way, try some sort of deliberate exercise each day - a brisk walk even helps!

 

No more about stopping treatment and letting CML take its course -- bad idea on *all* levels.  We all get discouraged (I know I do!), but press on and figure out the right treatment option for you.  You can do this!

[Gail's]

Thanks Mr Tee. I recently increased my Vit d to 5000/day from previous1-2000. Mostly because of scubas thoughts on it as well as my own research. I'm hoping that will do it. Plus exercise and all the other great suggestions.

[scuba]

Thanks Mr Tee. I recently increased my Vit d to 5000/day from previous1-2000. Mostly because of scubas thoughts on it as well as my own research. I'm hoping that will do it. Plus exercise and all the other great suggestions.

 

It's a pretty much a safe bet that 5,000 IU's per day (especially when not in the sun) is just fine and will keep you "healthy". When you add Magnesium and vitamin K2 to the mix, then the chance of "overdosing" on vitamin D (as D3) is very very unlikely. Even 10,000 IU's per day is not likely to cause problems. Vitamin D is a hormone (not really a vitamin). It stimulates the bone, the immune system and 300+ other things. No wonder it's tied to the sun.

 

I can't wait to hear that Trey had his vitamin D level tested. Then I'll know I was correct. Until he validates - you're all on your own.

(except me. I take 5,000 IU's every day when not in a summer sun 5 times per week except in winter when I take 10,000 every other day with 5,000 in between. But that's just me. It's not Trey approved. - Not yet anyway). Next week - no vitamin D supplements. I'll be depending on the Bahamas to fill me up.

[jmoorhou]

Exercise for me has completely taken away the fatigue I had, I actually didn't have it after taking the Gleevec because I've always tried to exercise.  But I was very fatigued before I was diagnosed.

 

Yes the scary thing is that a death from CML would be pretty bad, so thank god for Gleevec, the only side effect I have after a year is a chronic yeast infection which I'm not happy about, it started after about 10 months.

[gerry]

Low vitamin D levels and depression linked in young women, new OSU study shows

 

03/18/2015

CORVALLIS, Ore. - A new study from Oregon State University suggests there is a relationship between low levels of vitamin D and depression in otherwise healthy young women.

OSU researchers found that young women with lower levels of vitamin D were more likely to have clinically significant depressive symptoms over the course of a five-week study, lead author David Kerrsaid. The results were consistent even when researchers took into account other possible explanations, such as time of year, exercise and time spent outside.

http://oregonstate.e...osu-study-shows