18 replies to this topic

[rayandcindy]

My dearest and very best friend in the world has been diagnosed with CML Stage One a little over 5 weeks ago.  Prior to the diagnosis she had lost a tremendous amount of weight which we attributed to stress with job and personal issues.  Little did we know she had CML.  She is very underweight and is having major problems gaining weight.  The low weight causes her even more fatigue and low energy.

Any suggestions?  She is eating very healthy but the least little activity seems to 'eat' away at her caloric intake.  She eats small snacks and meals throughout the day and night. 

How quickly will the energy level increase?  She is currently taking 150 mg of Tasigna which was started three weeks ago..  She has been resting basically all day and night for the past three weeks...I can't help but wonder if all the inactivity is making her more tired.

Any input is greatly appreciated!!  I feel so inadaquate in this journey.

[cometbro]

I'd suggest she start getting more active little by little.  When I first started taking Tasigna 6 months ago, I wasn't doing much...but that's mostly because of the shock of having CML.  I decided to begin working out lightly about a month and a half later and now I work out fully 3x a week.  I think everything builds on itself, and if she starts working out a little bit, she'll feel better little by little.  In fact, I know that if I miss a workout, I begin to get lazy, which then causes more general tiredness.

It can be tough those first few weeks to break out of that funk but she has to understand that she will be fine and she should at this point be able to resume all normal activities.  As far as the weight issue, I lost a lot of weight prior to being diagnosed, but after taking Tasigna for a couple of months, then working out, I started gaining weight again and actually now weigh more than what I used to.

[rayandcindy]

Thanks so much for the words of encouragement.  I truly believe part of it is breaking out of the 'funk' as you so aptly put it.  She is so concerned that any type of working out or activity will cause the weight loss to accelerate more rapidly.  I know, small steps, one day at a time.  She has a doctor's appt tomorrow and I hope to discuss our concerns with him at this time.

Prayers to you!  Thanks.  I will keep you updated.  Any suggestions as to how to help her handle the depression (she is currently on an anti-depressent) will also be appreciated. She is not ready yet to join the discussion board herself...I keep telling her how so many people are living very normal lives with CML!  Her fear is holding her back from being the proative person she is normally.

Thanks again!!!!!!

[Taylor]

It probably depends.  Personally my issue was/is (I've been on Tasigna for about three months) that right at bedtime I would hit a wall (about 10-10:30), and even earlier if I were doing something really involved, like doing some exercise or being at a party--but some of that could be stress/anxiety, which I'm dealing with.  But my whenever my blood draws were done (basically just snapshots anyway) my RBC and hemoglobin were usually pretty good. 

I have tried to workout more for energy and to help me sleep.  I think it has helped, although I still have better days than others.  In any case, I think if your friend tried to slowly get into the swing of things, it would help both mentally and physically in the energy department.

As for eating and weight, I've slowly gained some weight back, but not a lot--I find the way I do my Tasigna/eating schedule is part of the issue.  But I think excluding factors like stress, weight can get back to normal pretty soon for her.

[Trey]

Energy levels are a problem due to a combination of the CML and the drugs, since both drain energy.  Unfortunately, the news is that she will likely face this problem for months, not weeks.  She should also have her Onc keep an eye on her blood counts.  I drank a lot of energy shakes just after diagnosis.  Trying to be somewhat active is very hard, but it helps.

[CallMeLucky]

The more she is inactive, the more tired she is going to be.  The less activity I get the more tired I am, so she needs to get moving.  She doesn't need to hit the gym, but she needs to get up, take a walk and get back to living.

With regard to food you need to look at the basics.  How old is she, how tall, how much does she weigh?  Figure out her caloric needs and then track how much she is eating.  She needs to be taking in enough calories to keep her body going and maintain her weight.  She should not over eat, but under eating is really bad.  So have her take a look at what she is doing and with some minor adjustments she should be able to get going again.

The diagnosis is hard, but the sooner she gets back to some normal routine, the better off she will be.

Best of luck

[rayandcindy]

I can't thank everyone enough for the information and encouragement!!  We met with her doctor today (great blood work results--YIPEE!!) and had a very frank discussion regarding her activity levels and fears with CML.  He is encouraging her to try to get back to a normal life as she travels this journey. I will continue to read the posts and will keep up with the discussions.  Just have to get her to a positive mental attitude again! 

Prayers and hugs to all!  This website is wonderful!

[grannyd]

Hi, congrats on the good results!!! I am only 4 months into this and I am also on tasigna. It is hard to hear you have CML as everyone has said, I am just now getting to where I want to do things & not dwell on it. Of course now with the warm weather it helps so much. The people on this board have been the BIGGEST HELP to me!!!! What a great bunch people who are all willing to respond with encouragement and they really care. I am still learning  & have so much more to learn but I always come here with questions. My thoughts & prayers are with you both, prayers to all, granny d

[luckback]

Hello to everyone. I just joint this community since I was diagnosed two weeks ago with CML. I just start today my treatment with Tasigna, and Im very worried about the treatment since you can find a lot of stuff on internet about this (some of that stuff is overwelming and not positive)... In the other hand, Im finding a lot of people who continues with their lives after start their treatment for many years... Im having a lot struggle with my mind, Im trying to stablished a big wall against bad thinkings, but it´s hard... Im 31, and my life was running excellent (personnal and proffesional), and this was a shocking experience for me... can someone tell me how is it? is it hard? how can I handle it? All the people tell me the same, "...don´t worry, everything will be ok, have faith, pray, etc" but at this time I didn´t talk with someone who have the same and how to handle it.

I know that this might be confuss and non-answered but I need some words of encouragement because I want to live a lot, I used to have many dreams for the future, and now, I dont know if I can handle this...

Words will be appreciate...

[jrsboo]

Dearest Armando,

Welcome to our very select little group.  I won't lie, depending on how your body reacts to the drugs will determine how your life will be affected.  Each of us seems to have our own set of side effects, some of the more common are gasto-intestinal problems, headache, fatigue, hair loss, skin issues, sun sensitivity, and some have cognitive problems.  Some are able to take their pills and go about their day just as before.  Some are forced to quit working, or switch jobs.  Most of us have hobbies and things we do just like before.  You learn what is important, and what to let go.  Cleaning the house may not be as important as going camping, or going for a motorcycle ride! 

I completely understand you being overwhelmed.  I just about lived on this site for the first 6 months after diagnosis last September.  It gets better.  You stop obsessing about everything, the more you learn. 

Knowledge is power, the more you know about this disease and the available drugs, the better your decisions can be. 

But we are here for each other, and you can always check in and ask about what is going on with you or to just vent.

Sending you warm hugs of reassurance,

Caroline

[GerryL]

Hi Armando,

Sorry to hear you have been diagnosed with CML - but welcome to the discussion board.

Since you've only been diagnosed recently it is expected that your head would be spinning with the news. I was diagnosed in the beginning of July last year and even now I find I have days when I feel a bit depressed about it all. But the good news is there are tablets that can put the disease on hold for the majority of us and newer drugs are being developed all the time. I am taking Gleevec/Glivec, but there are quite a few folk here who are on Tasigna, so there will always be someone around to help with any questions you may have with Tasigna.

And if you want to look things up on the intranet remember to always check the date of the information you're looking at.

Gerry

[donkatking]

I was diagnosed in February 2011 and had quite a few issues at first.  I was diagnosed when I went to the emergency room for a kidney stone.  Well it's now May and the side effects have really subsided.  I still have a few issues with tingling in my feet and I get tired more easily.  I had to experiment with time to take the Tasigna and found that if I take it at 4am and 4pm I can still have a breakfast and dinner and normal hours.  I will go in for molecular bloodwork in a couple weeks and it will be the first time that has been done since I was diagnosed.  My hemologic testing shows everything back in the normal range.  I asked the Onc when I would have another bone marrow aspitation done and he said he didn't want to do another until 6 months after being diagnosed.  So that will occur in August--I can't wait!  hmmmm  I am able to go to work as normal and I have picked up walking in the evenings.  So far it has meant sore legs and feet, but I know it too will get better.  I try to walk as much as I can at work as I work in the 2d largest building in the DOD next to the Pentagon and there are three floors and ramps.  I haven't checked my weight lately but my clothes sure have loosened up.  The primary care physician wanted to put me on Metforin as I might be in the early stages of be a diabetic but my last bloodwork at the cancer center showed me as being in the normal range and I told him I'd like to lose weight and try to get the count down on my own.  I hate taking and medicines.  I still take a Prilosec and a Lorazipam before I go to bed.  The lorazipam is for anxiety but I find it helps me sleep at night which was an issue when I diagnosed and before I was diagnosed.  So I get a fairly good nights sleep now.  Getting up and 4am to take Tasigna and going back to bed for a few hours takes alittle getting used to.  In all the issues I am having aren't too bad and I think will get better as I go on.  I hate the thought of having CML but figure "what the hell!"  could be worse.  Not gonna let this diagnosis beat me.  I read the really good article about Dr Drucker in the Smithsonian Magazine and am thankful for people like him as 12 or 13 years ago this diagnosis would probably have been a death sentence.  So have hope and push through.  I guess we all have and best of luck to you.

[Trey]

CML has become 95% survivable.

Read this for the newly diagnosed:

http://community.lls...age/14707#14707

[CallMeLucky]

Hey Armando,

Reading your post brought me back to June 2010 when I was diagnosed.  I wish I could bundle up everything that I have learned since then and give it to you to ease your mind.  Unfortunately it doesn't work that way, everyone must walk this road themselves.  Fortunately you have found a great resource to help you in this forum.  There are people newly diagnosed, people who have been in treatment for a few years and people who have been living with the disease for a long time.  Everyone goes through some different things, sometimes the side effects are a little harder on some people and some people have an easier ride.

I was diagnosed at 37 yrs old, I have two little kids, a career that is going well, I'm working on my MBA, and still doing all of that while learning to live with this chronic disease.  When I was diagnosed I was not sick, I went in for a physical and was told I had leukemia, talk about out of left field.  It took some time to adjust but things get better.  I really don't look at it as cancer anymore, because you will find it is different then most cancers.  People think cancer and they think the worst, they assume you are going to die or you will have to go through Chemo and/or get surgery.  For us it is different.  15 years ago this was a lethal disease, today it is a manageable chronic condition that most people survive.  You will likely live your normal life span, you may see a cure for this disease in your lifetime, you may not, I have been told I will most likely die with CML, but not from it.

Getting through the early days is tough, but as treatment begins and work and life gets back to normal over the next few months, CML will most likely become boring and just something you deal with.  You take your pills and you go about your life.  I don't want to minimize it, it is a serious disease, but the odds are well in your favor that you will live your full life, you will not be misearable and suffereing.  You will still acheive the things you want to achieve although you may have to modify things a bit.

Life is unpredictable.  You didn't plan for this so now it has thrown you off.  In time you will come up with a new plan that includes having CML in your life and you will be able to get back on with living.

I feel for you more than you know, but trust me when I say it will get better.

All the best.....

[luckback]

thank you so much Caroline for your words, I have two days taking the pills and the only feeling is headache sometimes

[luckback]

Thanks to everyone for all your words... it really helps me to feel better after reading all posts... each of you knows what are you talking about and it is not only support without any experience...

Im truly happy to be part of this blog, Im sure that I will be on contact all time for reading everything...

Thanks once again, I have two days with Tasigna and everything goes excellent, only a few headache but that´s handable...

[cousineg]

Hi ,

If she has just been diagnosed , I suggest her to meet Carolyn Blasdel .

It's normal to have fatigue with Tasigna.

She has to take a break of reading medical topics and  I will suggest her

to go to that link: CMLer's portofolio

But If she like more music, then she can go to:

The march toward healing

Too much angels in heaven!

The battle for healing

Welcome to our group

Gilles

[afireinside]

likes been said, its a combination of the cml and the tasigna. i know for me walking has helped me tremendously in my energy level, start off small and make your walks a little longer each time. i know there were times i wish i had a ride home so be careful. it will get better but its gonna take some time though.

[luckback]

Hello everyone I'm back to this selected group... I have now 7 months taking 600 mg of Tasigna daily.. Some headache once a week but not much.. I think that physically issue is only the fact that I sweating a lot and I lost  little bit of hair.. When I talked about this with my hematologist he said than the sweating is part of the Tasigna's effect and hairloss is part of my age stage and is normal. So he basically recommends to visit a dermatologist which I already did. I'm know taking some special shampoo and a medicated deodorant and that's it!,

About fatigue?. Nahhh... Nothing at all...

I'm making a routine of squash weekly and I'm feeling excellent even better than without CML! So if Tasigna's still like this, I would survive a lot lol!,