29 replies to this topic

[tiredblood]

Gail, have you had your vitamin D level checked? I've been on, off, and back on the TKI, but after learning my vitamin D level was low and starting Vit. D3, my aches and pains have *greatly* improved.

 

More new acronyms: BMTB= barely made it to bathroom. STSM= sleep tired sleep more. AAO= ache all over.

[Tucker1]

[quote name="chriskuo" post="185070" timestamp="1460009159"]Managing CML is like a job. Over time, some people are lucky enough to only have to spend a limited amount of time at this job and go on with most daily activities. However, many of us have to spend a significant amount of time on an ongoing basis managing our CML.
But it is important to have activities we can still do and get pleasure from, while at the same time taking our minds off our CML.[/quo
I have been reading this thread for a while and chriskuo's comment hit home. I have been working overtime for a long time. This is my 4th TKI (Bousitinib) and by far the hardest for me and I am still not sure if it will work for me. It is hard enough to live as we have to now without having to battle with doctors. I hoping for perhaps less overtime for my CML hob.

[ARTWOMAN]

Oh how I am so comforted by this particular discussion.  At times, and often, it is hard for me to feel like carrying on. I have dealt with severe mental illness for almost all of my 52 years. After having been told in July 2015 that I had some type of metastatic cancer (I broke my arm due to a presumed benign lytic lesion that had eaten away my bone) I was told that that diagnosis was a false alarm.  Yes, I was relieved. But, in the back of my mind -actually front and center - I knew I had cancer of some type. I had been sick for the prior 1.5 years and knew something was very wrong. I was persistent in seeking more information and tests. Then in October 2015 I was diagnosed with the CML in chronic phase. To say that I have been on the proverbial roller coaster of emotions is accurate. Cancer and severe mental illness are a double whammy for me. I have been considering no treatment at all with comfort care/Hospice as a choice because I felt I could endure no more pain and suffering. I was on Gleevec for 3.5 months - seriously bad side effects, no quality of life, and then intolerant. Very bad reaction to Tasigna. Now, Bosulif is on its way soon. This has been no picnic. Cannot predict actual side effects will have but my oncologist has ordered Marinol as I cannot take anything for nausea and vomiting (62 med reactions in my lifetime).   SO, not carrying on with cancer treatment is one path I could choose. Yet, I am choosing to continue receiving TKI or any other measures, at least for today and for the near future.  I have had one heck of a life of suffering but am still not ready to say die yet. Spiritually, prayer is a powerful thing for me as is my creative work (writing - can you tell?!, drawing, painting, photography). Maybe it is in finding our strengths and reasons to carry on that will help us survive our CML ordeal. I try to look at today and see what good can come out of it. Even when I feel so very lousy,and feel hope expiring, I look to tomorrow as a possible day for reviving my spirit and my body. Somehow, this seems to work for me. I am still alive, and that, I can tell you, is a miracle. 

[tiredblood]

I wish you well, Artwoman. I've learned it is better when I can get my mind on other things  which helps me not focus so much on my CML. My TKI makes me really nauseated at times. You'd think I'd be a thin woman by now, but quite the opposite. I hope the marinol works well for you. I know being nauseated keeps my mind on the fact that I have CML and take the TKI. A while back, I felt pretty good and did some cleaning and organizing in my home, but afterward, I was nauseated for hours. Excited because I felt like doing more than usual, but then disappointed that I was so nauseated. Maybe I should have broken the work down into smaller segments.

 

You've heard the old saying about taking one day at a time.  In the past, I've learned that sometimes, I've had to take life one hour or minute at a time, making things seem more manageable or tolerable.  Anyway, you mentioned prayer.  Be encouraged as the Lord is being glorified through you and your life.

[ARTWOMAN]

Hello everyone. I am learning the hard-headed way that reducing my stress and activity load, and increasing my rest and relaxation activities, are a few ways to keep sane and a little more upbeat in all of this.  Two years ago I was active and a caretaker. Now, the shoe is definitely on the other foot. I keep asking what it is that I am to learn from having cancer and severe mental illness concurrently. No astounding answers yet since being diagnosed with CML last October, but I have an inkling that hope, trust, letting go of negativity, and going towards positivity are involved.

 

These are brave words coming from one who has been on a TKI-free holiday for nearly 7 weeks. Yet, my CML symptoms are fast returning and round three of TKI therapy (Bosulif) looms in the near future. I am trying to "look towards the light" and to gain the strength to tolerate perhaps more living heck with side effects and CML. My journey is young, although I am not (53 in June). I have been to heck and back many times in my mental health life and have survived intact, well-weather-worn, but intact. I am trying to see my leukemia in a similar perspective so as to not be totally overwhelmed and totally depressed by the necessary changes I have had to make and the TKI nightmares. Keep your chins up, everyone. I am rooting for all of us. Peace.

[Buzzm1]

round three of TKI therapy (Bosulif) looms in the near future. 

ArtWoman, hopefully your Onc is in tune with Bosulif; a word of caution: others here are taking it and at least some, if not most, have experienced harsh side-effects on the full 500mg dosage, at which point they reduced their dosage to 200mg, or 300mg, before restarting it.  You may want to at least start out on a lower dosage..  With your history there doesn't appear to be a need to ever have you on full dosage

[kat73]

Artwoman - I am not sure, but I think Bosulif is supposed to be the TKI with the lowest side effect profile.  If that's true, then there's a light of positivity to go toward!  I think there's a thread of people on Bosulif here you might look at. I was going to say, also, that anticipating either success or problems could prejudice the result, but then I had to laugh and remember my own, first experience with Gleevec in 2009.  My then-onc said, "Most people tolerate the drug very well."  That comforted me enormously and I went bravely and confidently ahead with my pills.  O....M...G... WHAT was he smoking????!!!!  Sick as the proverbial dog.  Miserable, depressed, in despair.  Anyway, long story short, found my way out of that mess, and when I found my way to this forum I realized I sure was not alone.  Now, I still hear that ridiculous phrase in my head, but I wonder sometimes if that onc today sings quite the same tune for his new CML patients.  I kinda doubt it!

[TeddyB]

I'm tired of caring, tired of worrying. I find overtime I am caring less and less. Someone told me it is good, I should not worry and not care so much I will be happier but this doesn't feel that way. This feels more like a little part of me is gone each day. TKI is keeping me alive but I'm not who I was and I just can't tell if that is for better or worse.

 

Ditto

 

Today is 10 years for Mrs, and I can tell you without a doubt she is tired of being here.  You go to those meetings and they are all about how cancer doesn't define me and all this other.  That's because they cut yours out and threw it in the trash.  This one here, it doesn't go away, and yes, it defines you completely, each and every day is started, shaped, limited, and ended by CML.

 

I think of you all every day, and recent contact with Druker we thanked him for everyone.

 

rct

 

The C in CML sucks.

 

Maybe one day there will be a cure, maybe even in our lifetime, im lving in hope, but im feeling exhausted, tired of fighting.

[tiredblood]

Hello everyone. I am learning the hard-headed way that reducing my stress and activity load, and increasing my rest and relaxation activities, are a few ways to keep sane and a little more upbeat in all of this.  Two years ago I was active and a caretaker. Now, the shoe is definitely on the other foot. I keep asking what it is that I am to learn from having cancer and severe mental illness concurrently. No astounding answers yet since being diagnosed with CML last October, but I have an inkling that hope, trust, letting go of negativity, and going towards positivity are involved.

 

These are brave words coming from one who has been on a TKI-free holiday for nearly 7 weeks. Yet, my CML symptoms are fast returning and round three of TKI therapy (Bosulif) looms in the near future. I am trying to "look towards the light" and to gain the strength to tolerate perhaps more living heck with side effects and CML. My journey is young, although I am not (53 in June). I have been to heck and back many times in my mental health life and have survived intact, well-weather-worn, but intact. I am trying to see my leukemia in a similar perspective so as to not be totally overwhelmed and totally depressed by the necessary changes I have had to make and the TKI nightmares. Keep your chins up, everyone. I am rooting for all of us. Peace.

Thank you for your encouraging words and positive attitude.  I should read your post at least once weekly to remind myself to think positively. You and I are near the same age.  I can tell you that I've been amazed at the resilience of those much older than us who are able to take the blows life deals with such finesse.

[ARTWOMAN]

I think that age and life experience have a very great deal to do with how we cope. I try to view all of my life challenges in perspective. I do not fully know where my inner strength to continue my life-journey comes from.  After weeks of agony and anguish in trying to choose to continue aggressive treatment for my CML or to ditch it all in favor of letting nature and my "higher power" take their courses, I chose to not passively die. I still retain hope that I can help others through my life experiences not only from having cancer now, but from having to deal with severe mental illness and additional physical illnesses. I continue to nurture my dream of writing a book about finding hope amid suffering. I am coming to realize, at least for myself, that my tenacity in enduring my life challenges despite the crap and heck of it all, may be the whole reason why I still exist. (I have been critically ill and near death several times.) I am no saint nor am I noble in dealing with my issues. Yet, I want to be brave. I want to be my own heroine in my life-story. I want to help others to nurture their own inner tenacity and hope for living, despite new normals and new limitations and the ever-present need to compromise with illnesses we did not cause and that are often out of our control to eradicate. I hope this does not sound too goody-goody in the face of unrelenting CML, especially as I have only been diagnosed since Oct. 2015. It's just that I have had almost an entire life time (52 years) of illness and of enduring situations that were seemingly impossible to endure. Retaining hope amid darkness has helped me to endure. Thanks for listening.