13 replies to this topic

[Otigon]

I was recently diagnosed with CML after going to the doctor on April 12th. I had gone in for what I thought was stomach pain, but turned out to be an enlarged spleen. Subsequent blood tests showed my WBC to be at 268, and I had to spend the weekend in the hospital while they got more of a handle on it. They did a bone marrow biopsy and other blood work that verified the original diagnoses. I was sure freaking out at the beginning, not knowing that they had developed these wonder drugs.

So... I'm currently on Tasigna at a 300mg dose twice daily ( started 1 1/2 weeks ago). This is complemented by 1500mg of Hydrea daily to help lower the white cell count ( My doctor tried taking me off the Hydrea after starting Tasigna but my WBC jumped 45,000 in two days). I guess we are in a wait and see mode. My doctor wants to get my white cell count down lower to see if Tasigna will start working. My question here tho, would it be advisable to get a second opinion from a CML 'Specialist'? I live in Houston, and we do have the MD Anderson Cancer Center here. My current oncologist/hematologist seems like he knows what he is doing, but I can't stop wondering if there is something more I should do.

Maybe I'm just stressing too much? I've been reading and searching the internet non-stop for the past 3 weeks, trying to soak up as much information as possible on this type of cancer. I just don't know what to do. I'm 3 weeks in to treatment and my WBC is down to around 115, with platelets over 1 million, and low red cells.

-- David

[Fas]

Hi David,

 

Sorry that you have joined the CML club, albeit welcome - you are in a good place with well informed and caring people.  It is not unusual to wonder what do I need to
do and am I doing everything I can? Sounds like you are off to a good start, but getting a second opinion
can't hurt.  Being near MD Andersen is a great advantage, so why not go for it if you can.  More information, especial good quality
information is always better.

I was first diagnosed with CML in 2002.  At that time Gleevec was the only game in town.  I got a second opinion then and recently had a
consult at another major cancer center in my city just to ensure that continuing Gleevec was the best and most therapeutic course of action.  There are now  multiple tki drugs and many with CML can live relatively normal lives.  Stay positive and I wish you the very best in your treatment - keep us posted.  

 

Fran

[Trey]

I would suggest reading this for the newly diagnosed CML patient:

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

Your 268K WBC at diagnosis may have been a little higher than average but not near what some have experienced.  I know of several who were over 500K.  In isolation it is not an indicator of overall response over the longer term. 

If it were me I would wait and see how things go for a few months unless something changes in the wrong direction.  A Specialist would probably not do much differently for you than what is currently being done.  So almost all Oncs would want to see several months of response test data unless you have high risk factors (diagnosed in either Accelerated Phase or Blast Phase). 

[Susan61]

Hi David:  Welcome to our group.  Everything you are experiencing is exactly what all of us did.  We searched all over the internet, and sometimes got wrong information.  Follow what Trey told you to read. The best thing to do is give the Tasigna a chance to do its job, and your doctor will follow along with your progress.  Sometimes they make changes, but keep in mind that CML is a very treatable form of Leukemia.  Also, since they developed these TKI drugs its amazing at how they work on CML.  This is all new to you, and try not to absorb too much or you will get confused.

   Just come on here to ask any questions about anything, especially some side effects you might experience.  You will surely find someone else who has gone through the same thing and can answer you.

  We have a great group here, who is very supportive of each other.

  Take one day at a time right now.  I have been living with CML for 14 years, and there are people who have done even better than that.  Your going to adjust gradually.

Susan

[Otigon]

Thanks all for the words of wisdom,

Trey, that document was a great read. Thanks for posting it. It is nice to know that this has become a very treatable disease, so I think the main thing I'll have to work on is trying to reduce my stress and worrying. Anytime I get focused on something it becomes easy for it to consume me. I can only assume that wouldn't necessarily healthy for me at the moment. However, I will do my best to take it one day at a time, and be thankful for the minimal side effects that I've had to all these different medications. I'll be sticking around as I'm sure I will have plenty of questions down the road, and thanks to all of you for your words of support. It's nice to know I have somewhere to go for help, support, and insight.

Thanks,

David

[NotJack?]

Hey David,

If I were that close to MD Anderson, there is no way that I would miss an opportunity for a second opinion from one of the top oncs specializing in CML.   Second opinions are quite valuable, and standard practice.   Dr Cortes would be my choice.   Good luck, Jack

[jbinsd]

David,

I agree with Jack on getting a second opinion.  It's important that you feel comfortable and trust your doctor.  If it's financially feasible and/or works with your insurance, a second opinion is rarely a bad idea, if nothing more than to validate your current course of action.  As a side note, one of the interesting things my doctor told me about CML is that because it's so treatable, more doctors outside of the more hard core cancer treatment facilities are capable of handling it just fine. Doesn't mean it's not scary as hell though. 

I was diagnosed just a month ago - it's an awful roller coaster ride.  I actually documented my first month here (http://community.lls...e/163048#163048).  There may be some helpful nuggets in there when you feel like it - .

Good luck these next few weeks and keep asking questions if you have them.

- Joel

[jbinsd]

Trey, thanks for posting this.  I had not seen this one yet and it's still early enough for me to be hugely valuable.

[LivingWellWithCML]

I also agree with Jack.  If I was close to MDA, I would see Dr. Cortes without giving it one ounce of additional thought (assuming he's covered in your insurance network).  He's one of the best!

re: Stress & worry - I can totally relate to this and have some advice that might be helpful.  To set some context, for the first 9 - 12 months after I was diagnosed, the stress and anxiety that I had arguably posed a greater health risk to me than CML itself.  My mind simply wouldn't accept the fact that Chronic Phase CML was treatable, I was just waiting for the world to implode around me, but it didn't ... and as the months passed and the sun kept coming up each day, I eventually calmed down and now I feel totally healthy and (for the most part) pretty calm & optimistic about the whole thing.  As you respond to treatment, you'll find that the odds are pretty darn good that you'll outlive CML.

A couple of things that have helped me manage the stress and worry associated with CML:

• I started attending a local CML support group, so I could meet others who are living with CML and share experiences, etc.  That did wonders for my mind, body, and soul!  I even met one guy who has been living with CML for almost 20 years and was one of the first on the Gleevec trial (through MDA, I might add), and he was totally healthy and doing awesome.
• The other thing that helped me early-on and continues to help is exercise.  Through all of the panic and anxiety over that first year of treatment, I was running or swimming almost every single day.  And as my blood system recovered, my capacity increased and my distance & speed increased dramatically - and as this was happening, it started calming me down.  If you're in a position to get some daily exercise (even a walk), it has been shown to release chemicals in your brain that can reduce anxiety and stress.

Hope this helps -

[Otigon]

Thanks all again for the input,

As of now things seem to be going well. I have been off the Hydrea since Monday as my WBC was down to 33k, and my next test is due on Monday to see how I react to the Tasigna alone. I'll probably gather all my test results; blood, marrow biopsy, etc, and go see Dr. Cortes at MDA in a week or two. Not that I think my doctor is doing a bad job, but mainly for my own piece of mind and a second opinion on the matter. He just so happens to be covered under my insurance so I don't see how that could hurt.

Dan, I'm right there with you on the stress. Right now I'm just trying to find things to occupy my time so I don't think about it too much. I have stopped scouring the internet however!

On a side note, Have any of you, taking Tasigna, experienced dry/itchy skin? I'm trying to find a lotion that might help with that..

Thanks again all,

David Hill

[mariebow]

Of course itchy ,dry and for some of us wrinkly and crepe like skin.

[Ray99]

I have exactly the same issues as Mariebow mentioned.  I just use body lotion twice a day and it does help a lot.

Ray

[Lizzybee]

I had dry itchy skin for about the first year of being on Tasigna.  Use a thick lotion like Lubriderm or Eucerin.  If your scalp is itchy, look for shampoo with Tea Tree Oil in it.  Trader Joe's has one that is very reasonably priced - under $5 if I remember correctly.  Also, be careful when you're in the sun.  I didn't know that I would burn worse and had a miserable sunburn from a weekend at the beach a couple month after diagnosis.