29 replies to this topic

[xGunner]

I find myself in the condition where I have put a few too many things on my plate, heaped up a bit more stress, and overextended myself. Hit the wall, sleep for a couple days, and then jump back into the fracas.

 

The brain and the body only seems to go to a certain point, and then it rebels and calls for some down time. I try to convince myself that I can still rally and do heroic things, but I am learning that is a recipe for a few more days of 'crash time'.

 

It is probably just part of getting older, but I have got to learn to pace myself a bit better.  I hate the idea that I have to recognize that there are limits to how hard I can go.

 

Enough of the rant, enough of the request for a pity party.

 

Here is my plan. Identify what situations create the overload condition. Can something be changed to even out the load? What tasks or jobs can be offloaded or eliminated?

 

Can I schedule more downtime? (Is that some kind of oxymoron? Scheduled or structured casual time?)

 

Can I find some energy to focus on eating better and exercising? Burn off some stress and feel better?

 

And finally, so that I can blame this on something else-

I am convinced that for some folks (like myself) the definitive cause of CML is from excessive inhalation of unicorn farts.

[AllTheseYears]

xGunner:  Yes, I, too, am tired "of being here."  My CML diagnosis was 15 years ago.  While I'm glad of "Being Here," as in "Being Alive," I have to say I'm sick and tired of the whole CML/TKI thing with its constant rollercoaster of issues.  We live in an Inbetween Land where a cure apparently is out of reach; yet we aren't expected to die of CML. (That is if we ignore those nasty articles that say CML survivors might face unusual medical issues eventually.)

 

I think the common-sense approach you are taking is a good one. It mirrors a helpful little slogan I created to guide my life:  "A normal life span isn't the same as a normal life."  Downtime, pacing oneself, eating better, exercising, getting support ...maybe a little spirituality thrown in...that's accepting your life as it now is.  Accepting some limitations, yet working to make life a good as possible.  I applaud you.

[kat73]

Ha!  I was on my way to take a nap when I thought I'd check in here first.  Got other things to do, but I just can't push anymore today.  And yet, I haven't done very much when it's totaled up.  It does seem to come in cycles - a few days of energy and bustle, followed by the intense desire to veg.  I always think an hour will do it, but it usually is a couple of days.  I wonder sometimes if it's the actual "being tired of CML" that is kind of literally true - thinking and worrying and wondering about this dumb disease kinda wears you out.

[tiredblood]

It is easy to overextend yourself and even without realizing it.  I've been considering lying down for 15-20 minutes every few hours every day (until I am employed again), hopefully staying awake just to see if giving my body a rest will help.  I've felt tired for so long, I don't know what I would feel like if I didn't have CML or was not on TKIs.  Who knows, I may feel the same if I didn't have CML.  I did some home organization last week and was very happy about that, but was nauseated for hours afterward, which was a bummer.  Also, living life around the Tasigna regimen gets to me sometimes.

 

My thoughts are to do only what you have to do, and remember to do some fun stuff sometimes.

[Susan61]

I understand how all of you feel.  I am right there with you.  TIred of running for blood tests, and even after 16 years of taking Gleevec I still get side effects constantly.  My worst is low counts, fatigue, eyebleeds, leg cramps, and this orbital edema drives me nuts.  I guess my Spirituality gets me through many a day, and I have learned to just do what I can when I can.

I know some who have had no problem with their TKI and just go about there everyday routine.  God Bless Those Who Can.

My husband always reminds me of how many years since I was diagnosed in 1998 that I have gotten through, and that helps.

The best thing about these forums is that you can vent about how you feel, and somebody understands.

[steelpony5555]

Damn,  and here I thought I was just getting lazy...lol....Always been one to be doing something most of the time...but for the past year I could sit and watch grass grow ...well at least as long as I can keep the eye lids up...I have only been at this for a year and this not eating for a 3 hour stretch sucks...well Tasigna sucks but hey it's keeping us alive.....

[CML2012]

Yes to everything each of you said!!!

[CallMeLucky]

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.

[rct]

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

[surfdaisy76]

I have developed a new acronym for CML...it REALLY stands for...CONTROLS MY LIFE!!!!

 

It most definitely sucks some days!

[Gail's]

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

[Terran]

Right now I'm getting good results with taking magnesium and potassium supplements twice a day and taking one day a week to do nothing but nap. The nap day has to be scheduled in, usually Sunday, a real Sabbath.

[kat73]

Hi - Just got back in town, and agree with all of you.  I've been thinking lately that somebody needs to study the psychological effects of extremely long-term cancer.  I'm not sure, but I think we're the only ones "afflicted."  The other cancers are either fatal right away, or they are vanquished for awhile and come back, or - rarely, amazingly, miraculously - they go away for good and, yes, you always worry but you are not actively fighting cancer.  The only thing close to what we experience, I think, is the wait-and-watch approach with prostate cancer, or myelodysplasia, also sometimes a watch and wait situation.  At any rate, I think there ARE psychological effects unique to our situation in which we are required to fight cancer every single day, forever (or as long as fate allows) and deal with a diminished physical life with no change in sight.  Maybe diabetes is similar.  But, it's not cancer.

[gerry]

CLL can have a watch and wait approach, but without the TKI.

[Antilogical]

For those with CLL, Imbruvica is a new oral treatment that can have side effects that are similar to those we experience on TKIs.  We're not alone in this, folks.

[gerry]

Watch and wait is still used for people with low levels of CLL. http://www.lls.org/l...nd-drug-therapy

And it appears they have another drug they can use for CLL, which is great news.

Less than two years after the groundbreaking Bruton tyrosine kinase (BTK) inhibitor Imbruvica (ibrutinib) gained approval for patients with chronic lymphocytic leukemia (CLL), a second-generation agent has demonstrated a 95 percent response rate and durable remissions with a favorable safety profile in a phase 1/2 study, setting the stage for a head-to-head battle between the two drugs.

Acalabrutinib (ACP-196) generated responses in a heavily pretreated population with relapsed/refractory CLL, including patients with high-risk prognostic factors. This research was presented at the 2015 meeting of the American Society of Hematology, a gathering of more than 25,000 hematologists and other hematology/oncology professionals,1 and was reported simultaneously in The New England Journal of Medicine.2

After a median 14.3-month follow-up, 57 of the 60 evaluable patients had achieved a partial response (PR), including six patients with a PR with lymphocytosis, for a total overall response rate of 95 percent, said John C. Byrd, chair of Leukemia Research and director of the Division of Hematology at The Ohio State University Comprehensive Cancer Center, while describing the study results at the meeting.

He said remissions were durable, with only one case of progression, irrespective of whether patients had high-risk CLL with a 17p deletion. In fact, the response rate among the 18 patients with the deletion was 100 percent.

"The data are very exciting," Byrd said in a statement. "What is particularly remarkable is how well patients are tolerating this therapy. BTK inhibitors are transforming CLL from an incurable to a chronic disease, especially considering that standard CLL therapies typically produce a 35 to 40 percent response rate in this disease setting."
- See more at: http://www.curetoday...h.Gs0hgqhL.dpuf

[r06ue1]

I guess CLL is the least serious of all the blood cancers?  My Oncologist told me that if I had CLL instead, I wouldn't even need to see him.  From what I've read, people can live with CLL for a long time but it can develop into a more aggresive type and cause other cancers.  I would like to see more progress being made with the more serious types (AML and ALL) to tell the truth as those are far more deadly.  SL-401 appears to do a pretty good job with AML (I guess it can work with CML Blast phase also?) but I don't know if or when that drug will become available.

[kat73]

That's great news about CLL.  I hate all of 'em (the blood cancers) and I want them all to be cured!!!!

 

Back on the other subject of fatigue, I have begun to wonder if it doesn't somehow have something to do with ATP - that thing that is necessary for energy production for the leukemic cells, without which (because of our TKI binding and blocking the kinase that is involved in ATP) they die.  Maybe some other, healthy cells also suffer from being cut off from their energy source for division and life?

[Gail's]

My doc said there's an incredible load of work, especially at the start of TKI treatment where your body's eliminating the destroyed cells and ramping up production of healthy cells. Not sure if that explains the continued fatigue though.

[chriskuo]

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.