44 replies to this topic

[lrock]

Hello everyone.  I'm very new to this, only had my second oncologist appointment today.  Was diagnosed with CML.  My WBC were extremely high and that led my endocronogist to refer me over.  I had no idea this was even a possibility for me.  I don't know why, since I have thyroid problems and diabetes and high blood pressure.  I'm supposed to start Tisigna tomorrow morning and I'm nervous.  Introducing a new drug in with the other medications, what side effects I may have with it and things of that sort.  Any suggestions?   I'm 39, so I have a feeling I'll be dealing with this awhile.  Got another appointment next Friday for blood work and EKG.  Are all the steps this scary?  And, how do I deal with these feelings while trying to reassure everyone else, husband, mother, etc?  

Sorry for the 9 million questions, that's what I do...

Thanks for any responses in advance!

[HPL]

Hi lrock,

First of all, welcome to the club, but obviously wish you didn't have to worry about CML. First advice, is breathe...You have definitely come to the right place, people here are absolutely wonderful and extremely knowledgeable. I would approach this like a journey, you will have some downs, but you will also have some ups. CML is very treatable in most cases these days, making it somewhat of a chronic condition to treat. Everyone has different side effects, but if you take a look at the drug insert, you should find a list of the most common. Most are grade 1 or 2, meaning not too serious. Above all, work with your doctor, talk about what you are experiencing, and they can help treat both the CML as well as the side effects. And you may be a lucky one, and have absolutely minimal side effects. Very often the side effects do show up in the first couple of weeks, and then often diminish over time as well.

One approach (and there are many of course), is to have an open conversation with your family about the treatment and share what you are going through. In all likelihood you will appear normal to them, that they can't see any anxiety, side effects, etc. I believe in being open about it, and let them in on how you are doing. And above all, when you reach your milestones and start feeling better about the treatment (you will !), then include them in the celebration as well. I know this sounds strange, but in some cases dealing with a serious illness such as CML can bring out the best in people, and life can actually be richer. But the journey starts with taking your drugs every day, and talking to your oncologist, the rest is about hanging on for the ride.

Best wishes,

Hans

Woodinville, WA

Zavie's Zero Club # 1303

[jjg]

Hi Irock,

Welcome to the boards. Even though you are not new to medical issues you will not ever forget today. If you are feeling unsettled/scared/sad/lost.... the good news is it's entirely normal to feel this way.

I'm almost the same age as you, it wasn't in my life plan either. I know that when I was diagnosed I did feel some responsibility to reassure those around me, particularly my mum. My approach was to become well educated about CML and it is a disease with many many very good news stories. Your prognosis is good. In three months time when you get your first response results the chances are that you can be even more confident. Emotionally my husband was/is my rock. In the initial months he was the one who helped me deal with those feelings while I reassured the rest of the world. I also had some help from my primary care doc. I found dealing with feelings harder a month or so into treatment when the side effects kicked my butt for a while.

If you haven't found them already here are links to some of the useful info people have posted:

http://community.lls.org/docs/DOC-1213

http://community.lls...d/2600?tstart=0

I assume that you were dx from a bone marrow biopsy. It's good to make sure that you are getting treated according to the guidelines right from the start i.e. you have both FISH and PCR at diagnosis.

Good luck with all the tests on Friday, hope they all go well.

Josie

[Trey]

You have 9 million questions, I have 10 million answers.  Start here:

http://community.lls.org/docs/DOC-1271

Here are more:

http://community.lls...ttype[document]

[lrock]

Thanks!  I feel like I had information overload today so being able to go through the test abbreviations and what each one is and does helps a lot.  I did not have a bone marrow biopsy, my doctor said that the blood work they did was definitive enough.  I know the FISH test was on there, as well as 2(?) more?  I was set up to have that done at my appointment this morning but then they didn't do it (not that I minded, I was really nervous about that!).  I guess I just need to sort out what's important and what isn't. 

I do have a very supportive husband, but I can tell he's out of his element.  The look on his face when the word leukemia came out of the doctor's mouth last week pretty much said it all.  I feel like that's all I've thought about and talked about this week between family, friends and my employer.  They want me to sign FMLA documents next week "just to cover me".  I guess they are just trying to cover all the bases.  

Another thing I guess I'll need to come to terms with is that even though I'd not really planned to have kids, it's really probably not in the cards now.  At least the kitties love me and don't need reassurance!  They have been sticking fairly close, I think they can tell when I don't feel well.  Fatigue is currently kicking my butt!

[Judy2]

Hi lrock,

As everyone says welcome to the club nobody wants to join. I can't offer much technical advice, others on the board will do that, but I can offer support. I would be curious to hear what Trey thinks about you not having a BMB. Trey, if you are out there what do you think? It is very scary at first, hearing the word cancer, trying to learn all about a new disease and getting adjusted to the med can be overwhelming. It is difficult at first but you will get through this, it does get better. As someone said to me when I first posted, there are a a lot of people on this board with multiple health issues and somehow we get through it. Your onc. will make sure there is no interaction between your meds. It can be a bit of a roller coaster at first, numbers up and down, getting adjusted to the side effects but remember we are all here for you. This is a treatable disease, you will have a normal life span and a good quality of life. Post often with any any questions and also if you just need to vent.

Judy

[hannibellemo]

Hi, Irock and welcome. I was watching a video today featuring Dr. Cortez, a leading CML physician and researcher. It lead me to another video about the importance of an initial BMB and what physicians learn from it far beyond the initial definitive diagnosis. It's not all bad news though, he went on to say that there is really no need for BMBs after reaching CCyR or MMR  unless something else were to happen.

Thought you might want to see it (it's short). http://www.patientpo...s-in-the-future  (I just watched the video again by clicking on this link and the video quality was horrible, you may have better luck by cutting and pasting the address in your browser.)

Glad you're here!

Pat

Message was edited by: Pat Otto

[Lori's okay]

Hi Lrock,

Sorry you need to be here but glad you've found this supportive group!!  I started Tasigna in December, so am also pretty new.

You asked 'are all steps this scary'?  Several lovely folks told me that when I was getting diagnosed and about to start treatment that that was by far the hardest part.  I've felt that way so far.  Even with some side effects at least the process has started.  Deep breaths are good.  It really is a treatable illness now!

One suggestion/question:  Did your doctor do an EKG and Echo-cardiogram yet?  My understanding is that those should be done before starting Tasigna and then repeat the EKG at one week.  You might want to call and ask about that. 

Maybe we should start the "9 million questions" sub-group on here!  That so describes how I've felt.  Trey really does seem to have more answers than I have questions!!

Hugs and keep posting!

Lori

[Lizzybee]

I think for most of us, the first couple weeks or months are the worst.  At my first oncologist appt, he assured me that I'll be able to have a normal life. Two days later, I was admitted to the hospital because I was so anemic I could barely move and I was spiking fevers. I was afraid this would be my new life - in and out of the hospital, missing work, feeling crappy.  But six months later, I am doing so much better.  I wouldn't say life is quite normal yet, but it's much better than it was before I was diagnosed and started treatment.

As for reassuring everyone, give them the facts and let them know you're not going to die from this, but don't take responsibility for their emotional well-being.  Instead, admit that you are tired and weak and could use some help.  If someone offers to bring you a meal or clean your house, let them!  Don't try to be strong for everyone else right now.  My oncologist told me to take 6 weeks off from work and he told my husband that he needed to do the housework.  It was nice to have him to advocate for me, because I would have just kept on trying to do everything I was doing before.

Your first EKG needs to be done before you start Tasigna because it provides a baseline, then the second one needs to be done one week later.

[Susan61]

Hi Irock:  So glad you reached out to this discussion board.  That was your first great step to fight your CML.  I say this because no matter who you talk to including your Oncologist, nobody can answer your questions or feel like you do except others who also have CML.  You do have other health problems, but you can still do very well.

The day your told you have Leukemia is a day you always remember, because Leukemia was always such a horrible word in the field of cancer.  Keep in mind that Leukemia is not like it was years ago, and CML is one of the Leukemia's that are so treatable and more and more is learned each day.

     You can read some of my old posts to encourage you.  I am Living With CML now for 13 years, and as of this past week it is 9 years that I am undetectable through my PCR Testing.  You will learn all about the different levels of testing and what they tell you.  Do not try to learn everything all at once.  It took me awhile to grasp a lot of things..

     Just ask all the questions you want to at anytime, and you will get explanations easy to understand.  We have so many on different types of TKI Drugs like Tasigna, Sprycel, Gleevec is what I am on all these years.

     You said you have a very supportive husband, and that is fantastic.  He will learn right along with you.  My husband has been my support since day 1, and he has gotten me through a lot.

     Tasigna is working very well with a lot of our people in the group.  Please keep in touch and share and let us get to know you. 

    Relax and take one day at a time.  It will all work out.

Susan

[lrock]

good afternoon everyone!  Thanks for the responses, they are helping quite a lot!  I must have been exhausted last night - I slept for almost 12 hours!  I had a hichup this morning, I went to take my first dose of medication and the samples that the doctor's office gave me yesterday were expired.  Since they are a new drug to me I thought I'd better stay on the safe side and not take them - hopefully my pharmacy will get their order in today or tomorrow for me to start.  I would really rather start on a weekend that during the week, but I guess if I don't get them until Monday, then I just don't. 

I think it's great that everyone is so positive and have had successes with their medication, although I know this isn't the case all the time.  I look forward to becoming an active member (and maybe even eventually helping out someone newer than me?) and getting to know everyone.

[luvmybees24]

I was dx  in November 2011. I'm 34 and no kids either. I wasn't planning on having them but also not sure if I can now. Not sure how that works. I think if you are in remission you can go without the meds through a pregnancy? I figure I'd cross that bridge when I came to it. So far only side effect from the Tasigna is bloating. Kinda sucks but it's better than undergoing IV chemo and a bone marrow transplant. ya know?

Laura.

[Steve-o]

lrock,

As everyone else has indicated, you've found the right spot for answers to your questions. Lots of wonderful caring people with the same fears and anxieties as you. It will get better. I would like to help ease any concerns about not having a BMB at diagnosis. While it does go contrary to care guidelines, as long as you start the med and get closely monitored with blood tests you will be fine. Again, I'm not advocating not having a BMB - I didn't have one until 6 months and am progressing fine- just want to ease your mind a bit. Also, I would make sure you take advantage of the FMLA offer. As an example, I used several days around my 6 month BMB and it was nice to not have to use vacation time for those days off. Just make sure to request an intermittent leave. Take care.

Steve

[GerryL]

My doc said the main concern for pregnant women with CML is that the pregnancy puts stress on the body and could put her into the accelerated phase. But if a women really wants to get pregnant then the process seems to be to put her on one of the second generation TKIs and wait until she achieves at the very minimum an MMR. Some info is available here http://www.cml-found...limit=6&start=6

[lrock]

So quick update - no meds yet, the pharmacy is having a hard time getting them in - maybe tomorrow.  Guess i'll start tomorrow night barring not getting them again - I sooo didn't want to start during the week but I can't wait until next weekend b/c that stretches out my doctor's appt too far.  pooey.  but, on the upside, a whole week w/o a doctor's appointment! woo hoo!!  (It's the little things, right?)

If I start tomorrow I'll go back next wednesday for blood work and f/u EKG to see how I'm responding.  I'm hoping for perfectly.  One can wish, right?

We're in the middle of trying to sell our house, and stress at work is going to get worse - we have a huge case going to trial this summer and I'll have to get all the attorneys organized, that's something i'm not looking forward to. 

in re: kids - I'll be 40 in May and between the husband and cats I just don't think I'll be doing kids - got a great 9 mt old nephew that I'll just spoil so much his mom won't know what hit him. 

Anyway, that's about it for me today, pretty good day today, just some fatigue but it was worse last week.  I'm slowly learning and trying not to do too much. 

Anybody else in my neck of the woods?  I'm in South Carolina.

Thanks for all the support people!

Leigh (aka lrock)

[Happycat]

Leigh,

Welcome and my condolences that you ended up here!  Sucks, doesn't it?  But taking TKIs is a heck of a lot better than the alternative, so I'll deal with it.

One comment on your pharmacy. Don't know which one you are using, but if they have a hard time getting it, might be worthwhile seeking to a specialty pharmacy.  I get mine from the oncology pharmacy at the hospital. I love them.  They always have what I need and if I forget to call in a refill, they call me. Love, love,love them! 

Traci

[pammartin]

Welcome Irock,

Sorry you had to find us, glad you did.  These people are awesome, they support, advise, make you laugh, go over your test results with a fine tooth comb, and are always here when you need them.  One of the best parts about this site is the credible information you will receive, as Trey mention, he has millions of answers, as do many others, so ask away, and don't be shy about a topic, they are all discussed here at one time or another, sometimes laughed at, sometimes cried over, but nothing is taboo.  I am new here myself, so others will offer you better information than I can, but I can offer you my ear, shoulder, or stomping stone whatever you may need.

Your information journey begins, read on!

Pam

[lrock]

Thanks Traci. I actually considered that the only things stopping me is that I take a lot of other meds and I don't want them to be at different places so I'd  have to see if I could get everything there. Also, are they open on weekends? Plus, the pharmacy is right next door to work and if I need them to, they will bring my meds to me.  Hopefully it will work out, but I'll keep that in mind. Thanks for the suggestion

[Happycat]

The hospital pharmacy mails the gleevec to my house, so it's pretty convenient for me. Good thing, because I don't want to go downto Boston to get it! 

Come to think of it, I think I will be transitioned to another oncologist this spring, outside of Boston. My onc is needed by far more sicker patients than I. That means I will likely have to find a new pharmacy, wahhh!

Traci

[lrock]

I'm so frustrated!  I've been trying to get my medication since Friday, and I've just now found out that no pharmacy in my town can provide it, including my hospital pharmacy.  I stayed on the phone for about an hour and 1/2 between my insurance company, doctor's office and "specialist pharmacy" for them to tell me its going to be about 3 more days before they can ship the drug.  I'm at the point where I just want to get started and not have that first pill hanging over my head.  this is messing up my doctor's appointments too - can I just say arrruuggghh????? 

I'm really tired, I feel like I could go to bed and sleep for days.  My head hurts too, but that's probably stress from work and this meds issue. 

Did anyone else on Tasigna get more fatigued or did it abate?  I really don't think I can get much more tired and still function.  That is a problem since we've put our house on the market and are moving - we are buying my grandfather's house that my mom grew up in - only about a mile from where we are - and it needs lots of work, lots of old wallpaper and painting and floors, etc.  So much to do it makes me tired to think about it.