15 replies to this topic

[cwade61]

28-year-old white male diagnosed in January 2012. "Remission" in June 2014. Tasigna 300mg x2 daily.

Not sure how many people read this, but posting anyway.

I find it hard to keep up with this forum...mainly because I'm embarrassed to have this disease, and I try not to think about it. Yes, it does suck to be branded with "cancer." It was especially strange to be diagnosed with CML at 25 (a disease that isn't common for people my age) and have to start taking pills that make me feel shittier than I did in the first place, while forking out thousands of dollars a year to pay for them.

 

My real struggle has come from trying to justify the disease to my peers. How do I explain that the "chemo" I have to take every day isn't the same as the kids in the St. Jude's Hospital commercials? I'm not losing my hair, losing weight (unfortunately), and not puking 24/7. I still feel like shit, but since I'm not in the hospital, no one seems to understand.

 

I feel stupid now. I can't speak fluidly like I used to. I acted in plays before this medication. I was the "funny guy" among my friends. I used to sweet talk every woman I spoke with (especially my grandmothers). Now, I second guess myself in every sentence because I feel that I've lost any sense of short-term memory. I know what I want to say, then all of the sudden, it's gone.

I'm constantly tired. Luckily I work second shift, because I usually don't fall asleep easily. I don't know if my sleeping problems are from the lingering knowledge of my diagnosis, or from the $90/pill capsules I have to take every morning/night. Regardless, even after my eight hours of sleep, I don't want to get out of bed. I feel weak, I feel tired, and I especially feel unmotivated.

 

Lastly, I feel labeled. I tried hard not to tell people what was going on with my health, but word got around. It's hard for me to play the role of "guy with cancer," because I don't feel THAT sick. I've always looked at cancer as severely crippling, but I've never felt severely crippled. I've never accepted the fact that this disease could very well come back and kill me. I've felt worse from lesser illnesses. The hardest part of having CML is trying to justify yourself to your peers.

I feel like I don't relate to a lot of people on this forum. If anything I wrote makes sense to anyone reading this, feel free to contact me.

 

- Charlie

[Billie Murawski]

Hi Charlie, I am sure glad you got on the board and finally vented,you definitely need to go easier on yourself. We all feel like we're "different"  It's hard to explain our disease and to live with it. Yes you are way to young to have it there seems to be more and more younger people getting it. I believe it's from all the elements we are exposed to. You don't have to justify yourself to anyone. Everything you wrote makes complete sense to all of us we have all been there. It's hard to accept cml, the brain fog and fatigue, and just feeling shitty is hard to deal with, that's what is so great about this board we all feel shitty too. Jump in more often.    Billie

[chriskuo]

I agree with Billie.  In addition, make sure you are doing all you can do to help yourself.

 

1)  You need to work with your doctors on your side effects.  Have you talked with them about switching drugs or ways to alleviate the side effects?  If they are not helpful after discussing it with them,  you may need to consider changing doctors or getting a second opinion.  Is your current doctor a CML specialist?

 

2)  You should not be paying $90/pill if you have insurance.  Do you have insurance?  If not, why not?  Have you checked out patient assistance plans at the drug manufacturers or service agencies?  What about LLS?

 

It is fine to rant -- CML has added new complications and restrictions on your life.  But you are alive, and up until 15-20 years ago, life expectancy was about 5 years.  So we are fortunate to live in the era of TKI drugs.

 

There are some things you can still control as mentioned above.  Taking charge of them will improve your mental state.  And in addition to taking charge, it is alright to consider counseling.  You don't want to go through this alone, but support of casual friends won't generally be enough.  Being able to confide deeply in someone is a big help.  Being a "caregiver" to us is as much about that kind of support as it is about the physical things.  But feel free to rant here in the meantime.

[scuba]

28-year-old white male diagnosed in January 2012. "Remission" in June 2014. Tasigna 300mg x2 daily.

Not sure how many people read this, but posting anyway.

I find it hard to keep up with this forum...mainly because I'm embarrassed to have this disease, and I try not to think about it. Yes, it does suck to be branded with "cancer." It was especially strange to be diagnosed with CML at 25 (a disease that isn't common for people my age) and have to start taking pills that make me feel shittier than I did in the first place, while forking out thousands of dollars a year to pay for them.

 

My real struggle has come from trying to justify the disease to my peers. How do I explain that the "chemo" I have to take every day isn't the same as the kids in the St. Jude's Hospital commercials? I'm not losing my hair, losing weight (unfortunately), and not puking 24/7. I still feel like shit, but since I'm not in the hospital, no one seems to understand.

 

I feel stupid now. I can't speak fluidly like I used to. I acted in plays before this medication. I was the "funny guy" among my friends. I used to sweet talk every woman I spoke with (especially my grandmothers). Now, I second guess myself in every sentence because I feel that I've lost any sense of short-term memory. I know what I want to say, then all of the sudden, it's gone.

I'm constantly tired. Luckily I work second shift, because I usually don't fall asleep easily. I don't know if my sleeping problems are from the lingering knowledge of my diagnosis, or from the $90/pill capsules I have to take every morning/night. Regardless, even after my eight hours of sleep, I don't want to get out of bed. I feel weak, I feel tired, and I especially feel unmotivated.

 

Lastly, I feel labeled. I tried hard not to tell people what was going on with my health, but word got around. It's hard for me to play the role of "guy with cancer," because I don't feel THAT sick. I've always looked at cancer as severely crippling, but I've never felt severely crippled. I've never accepted the fact that this disease could very well come back and kill me. I've felt worse from lesser illnesses. The hardest part of having CML is trying to justify yourself to your peers.

I feel like I don't relate to a lot of people on this forum. If anything I wrote makes sense to anyone reading this, feel free to contact me.

 

- Charlie

 

Charlie - If you are having problems sleeping, memory and any muscle aches it's a fair bet you are magnesium deficient. Tasigna (as well as the other drugs) is known to deplete the body's Magnesium levels. Magnesium helps you sleep as well as alleviate muscle cramps.

 

https://www.insidetr...an-improve-your

 

The kind I take is Magnesium Taurate (two 125 mg per day. One in the morning, one at night). Sometimes I take more (as Citrate) depending on how I feel. Another form is Magnesium Citrate. Not as good as Taurate but useful. Stay away from Magnesium oxide. It doesn't absorb well. 

 

You don't have cancer. You have a condition. A condition that is very treatable and in time you won't realize you have it. People with Cancer take chemo - you don't take chemo. You take a Tyrosine Kinase Inhibitor. Very different beast. Over time, there's a good chance your CML will die out on its own (Trey's theory) and fade (you won't need the drug anymore). 

 

Don't tell anyone you have CML or "cancer". The fewer that know the better. Life is simpler that way. Take your Tasigna - get smart about food. Drink wine or Scotch, smoke a cigar and charm the ladies. You'll be fine.

[dede5]

Charlie, I can't even imagine what it would be like to have to deal with this in your twenties. At any age, the physical issues notwithstanding, the psychological impact can be astronomical. I feel like I live in a vacuum. I'm carrying around this huge thing, yet nobody but me can see it. You don't have to justify yourself to anyone, but I know exactly what you mean. I didn't even find this forum until I was being tested for a second type of leukemia. It turned out better than the first, for which I'm very grateful, but the forum has been a big help to me. I can come here and find people who are dealing with similar issues and they do understand, while trying to communicate with friends and/or family about this is a major source of frustration. 

 

I do hope that some of the advice you find on here will help you to get your life back. You're young, strong, and it sounds like you were a fun-loving person before you were hit with this. It may take awhile, but I have faith that those things will help you to get back on track. 

[Terran]

Wow you're not much older than my oldest son. I can see how the adjustment would be harder for you. We need to focus on your value and what you have to offer, so you can start charming the ladies again. You're on this planet for a reason. Don't underestimate how much this world needs you. A charming young man has the ability to help ladies of all ages feel good about themselves, and that's important. Now you're having to use the witty words less, but I bet your empathy is much stronger. I know mine is.

[Gail's]

Cwade, just have to say, while it's not always fun, welcome to the club of those who get it. It's been a helpful place to go, with suggestions for feeling better. I kind of expected some aches and pains as I got older, but not this soon. I am very sorry you're having to deal with this so soon in life. There are other younger people from time to time so check back. If you can find one, just wanted you to know the cancer support group I attend is so much help to me in getting thru the down times. Almost all of us have times we're discouraged so it helps to have this forum to vent.

[JPD]

My primary onc (I go to him and a CML specialist) told me just to tell people I had a chronic blood disorder, I just choose to tell the vast majority of people nothing - much for the same reasons you stated.

 

However, I am not above dropping it like napalm if Im feeling like it - "oh, why didnt I unload the dishwasher?  I dont know, maybe because CANCER". 

[cwade61]

"oh, why didnt I unload the dishwasher?  I dont know, maybe because CANCER".

 

Ha! JPD, my girlfriend got sick of that one very quickly...that doesn't mean I don't still use it from time to time.

 

To everyone else that replied, I really do appreciate it.

[Frogiegirl]

Cwade.......I Totally get it! we don't look horribly sick so its hard for co-workers and others to see us as having "side affects" to our CML. My Boss asked me " soooo when do you start losing your hair"?  In my head I thought Holy shizzz its half the thickness and length it was when this mess started! (not to mention the two tiny bald spots I have to really work at covering ) I felt like I needed to convince him how drastically things have changed for me.....but I didn't. I, like you am tired of trying to convince people of the Hill I feel like I have to climb everyday to try and live a "normal" life. This is embarrassing but...there was one instance where I threatened my family that I was going to go off treatment because I was soo damn sick and tired of being sick and tired and feeling like people around me weren't taking my illness seriously. Like a child I refused to take my pills for two doses. made my mom cry and my hubs too. I felt like an ass. I don't know if I was looking for reassurance that this crappy way of feeling all the time mattered or I was just being an ass? validation probably. but that's why I love this place.....you are validated here. they get it. better then anyone. Oh and about the price of the meds...I have thought to myself that's a lot of money just for little ol me to stay alive "am I worth it"??? But then I have to think of my two boys....they are worth it. even if I feel like I'm not. they deserve a mommy for as long as possible.  Message me anytime if you need to talk....believe me, we are all getting something out of your post. validation mostly because we all have felt this way sometime in our journey. Oh the lovely "brain fog" hope that all made sense

[IGotCML]

Charlie, everything you wrote makes sense to me.

 

I have been on Tasigna just over 2 years and it has negatively impacted my sleep. Frequently after I wake up I am still tired and not refreshed. That never occurred before I had CML so I put the blame squarely on Tasigna.

 

The Tasigna also makes me feel like shit some days. Exercise has helped reduce the tiredness/drag/fatigue but does not completely remove it. It sucks, but I still haven't figured out a way to completely remove it, even with a lot of exercise and I am now eating the healthiest diet of my life.

 

Other people are not going to understand the impact of taking a TKI every day, especially when you look like a perfectly normal person to the rest of the world. I have tried to explain my CML to those not in Club CML the best I can but they really don't understand.

[alexamay09]

You are justified in having a rant.  People here 'get it'.  I find it bad enough having health issues at my age and think it is crap that you were diagnosed so young.  You should be be bursting with energy and yet you are having these horrible side effects.

 

No one really understands this condition unless they have it.  Some days I am so tired I can't function and here I am still working 4 days a week in a mentally exhausting job and with the million other commitments that home and family give.  I confess at times to feeling sorry for myself and SO bored with the fatigue, breathlessness etc. etc.

 

Be kind to yourself and hang in there.  You have the right to feel how you feel.  Good advice from others about trying to improve the side effects.

 

Alex

 

[klf2013]

28-year-old white male diagnosed in January 2012. "Remission" in June 2014. Tasigna 300mg x2 daily.

Not sure how many people read this, but posting anyway.

I find it hard to keep up with this forum...mainly because I'm embarrassed to have this disease, and I try not to think about it. Yes, it does suck to be branded with "cancer." It was especially strange to be diagnosed with CML at 25 (a disease that isn't common for people my age) and have to start taking pills that make me feel shittier than I did in the first place, while forking out thousands of dollars a year to pay for them.

 

My real struggle has come from trying to justify the disease to my peers. How do I explain that the "chemo" I have to take every day isn't the same as the kids in the St. Jude's Hospital commercials? I'm not losing my hair, losing weight (unfortunately), and not puking 24/7. I still feel like shit, but since I'm not in the hospital, no one seems to understand.

 

I feel stupid now. I can't speak fluidly like I used to. I acted in plays before this medication. I was the "funny guy" among my friends. I used to sweet talk every woman I spoke with (especially my grandmothers). Now, I second guess myself in every sentence because I feel that I've lost any sense of short-term memory. I know what I want to say, then all of the sudden, it's gone.

I'm constantly tired. Luckily I work second shift, because I usually don't fall asleep easily. I don't know if my sleeping problems are from the lingering knowledge of my diagnosis, or from the $90/pill capsules I have to take every morning/night. Regardless, even after my eight hours of sleep, I don't want to get out of bed. I feel weak, I feel tired, and I especially feel unmotivated.

 

Lastly, I feel labeled. I tried hard not to tell people what was going on with my health, but word got around. It's hard for me to play the role of "guy with cancer," because I don't feel THAT sick. I've always looked at cancer as severely crippling, but I've never felt severely crippled. I've never accepted the fact that this disease could very well come back and kill me. I've felt worse from lesser illnesses. The hardest part of having CML is trying to justify yourself to your peers.

I feel like I don't relate to a lot of people on this forum. If anything I wrote makes sense to anyone reading this, feel free to contact me.

 

- Charlie

Hi Charlie,

I get it...we all get it... this sucks!  I especially relate to your trouble expressing yourself. Before CML, I was in a PhD program.  I was able to articulate every thought I had clearly.  After a little over a year, I have come to the realization that I am just not able to get my thoughts across anymore like I used to. Let alone remember the thoughts that I had!  So, no more PhD program for me. As far as the cost of your meds, listen to what others have suggested. Many MD's never give cost a thought when deciding which TKI to put you on. It is worth looking into.

Perhaps the hardest part of CML, is that it is cancer, which evokes a certain response within ourselves as well as those we love. WE continue to carry it everyday, and we don't have the cancer "look" that everybody expects. It's as if people start to resent the fact that we don't have the "look". Are you sure you have cancer?  At least that is my own interpretation.  I used to almost feel guilty on my good days. Like I wasn't supposed to, because I have Cancer. You can call it a chronic condition, a blood condition, whatever, it still has leukemia in the name. And as I said, it sucks.  I am sure this didn't help much...but at least you know you can jump in and rant anytime...because we all get it!

[August1]

Hey Charlie,

I hear you loud and clear. We look just fine on the outside and that makes it really difficult for people to relate to what we're going through.Most people don't really even know what Leukemia really is, let alone understand the side effects of TKI medication. 

 

Prior to CML I was super active. A mountain climber, skier, and mountain biker. Now there are times when my legs feel like they're filled with sand, I have chronic headaches, and some days are a struggle. 

 

It can get frustrating but I reassure myself that it's the meds causing all of this (and not the CML). I keep the hope that one day I can reduce my dose and gain some of my energy back or that newer and better treatments become available. Perhaps even a cure. So I don't accept that this state is necessarily permanent and keep pushing on.

 

Also, you may be able to try another TKI to see if you have fewer side effects. Everyone's biology is different so maybe something else would work better for you. 

 

Take care,

[MamaK]

Okay, y'all, I'm back after a long time away from the forum. Diagnosed July 2008 and was trying to wrap my head around the word "cancer" and found the LLS site. Charlie, you have come to the perfect place to rant. This group has probably saved many lives and certainly helped us face our fears. We are all CML victims and survivors. Or as best I can remember. Some of us have quirky personalities, but everyone on this site is here to support one another.

At least one of us was diagnosed and began treatment over 12 years ago. She is still going. A full life is out there for the taking. Grab it!

MamaK

[AllTheseYears]

Hey, Charlie:  I soooo get where you're coming from.  You're completely justified in your "CML Rant."  I still rant, and I've been a CML survivor for 13 years.  I just get tired of bearing the burdens thrust upon me by CML, the burdens you described: fatigue, pains, treatment side effects, doubts, financial issues, fear, and yeah, anger.  Sometimes it's hard to accept these costs for the privilege of living....but they are worth it.  We are lucky that our diagnoses came after the "miracle drugs" came along. We get to live.

 

I particularly understand your comment, "My real struggle has come from trying to justify the disease to my peers."   What I have learned is that I don't have to justify anything to anybody.  Unfortunately, co-workers, friends and sometimes family just don't get it, even when they try.  And why would they?  Living with CML (even when you're labs say you're not actually in the clutches of the disease; it can return) is not what other people expect or understand. And, every survivor is unique, so that makes things even more complicated.  I've learned to complain only to people whom I trust to understand and provide support.  That's a small circle. With others, I stay quiet, or, if they know about my CML, I treat the situation with a humorous quip:  "Well I'm the picture of health except for this cancer thing. But thanks for asking." Then I laugh. Usually, they do to...and change the subject. 

 

I think my journey with CML, the treatments and the side effects has been more of a head game than a physical struggle.  After my rants, I give myself a "talking to" and tell myself: "Whatever comes, I can face it, and I will."  

 

Please take care of yourself by eating well, moderately exercising (whether you feel like it or not) and get the spiritual and social support you need.  I've found that if I don't do these things, isolation creeps in. That isolation can be my worst enemy. Try not to give up on your peers.  My best wishes to you.