23 replies to this topic

[donkatking]

I have just been diagnosed with CML and just feel like my feet have been kicked out from under me.  Have just started Tasigna and the main side effect I have had has been Diarrea.  Anyone have a good way to deal with this.  I go back to work on Monday after my doctor's appointment and blood draw.  Any information or good advice, good questions to ask the doctor will be greatly appreciated.

[cousineg]

Hi Donkatking,

                                                              

               If you've just been diagnosed ,  I suggest you to meet Carolyn Blasdel .

                        

If you like art, look at the CMLers portofolio and relax.

.

Also see:

            

"I'm scheduled to see my hematologist next month. Are there any preparations I should make in advance?"

What you have to know about Tasigna (Nilotinib)

               

Good luck!

                    

Gilles

[cousineg]

Hi Billie,

             It's a Buick 1926. I rented it for my daughter's graduation.

Regards,

              Gilles

[cometbro]

Hey donkatking,

We know exactly how you feel.  After the initial shock wears off, and you absorb more information from this discussion board and other websites, you'll realize that you'll be just fine.

As far as diarrhea, I had it for a few days but it wore off real fast.  It won't last long.  Seems to me that from reading this message board, the most common side effect is itchyness with Tasigna.  Everyone has a different level and variation.  The best thing to do is deal with them as they come, if you even have any.  Tasigna for me, in comparison to Gleevec is very easy to tolerate.  I took Gleevec for a week and a half before the Tasigna arrived and I was feeling sharp stabbing pains on my legs and bones.  With Tasigna, I forget I have CML.  The only small reminder is when taking the pills.

Since you are new to this, the thing you have to make sure is that the proper tests are done for you at diagnosis.  Just confirm if a FISH test, Bone Marrow Biopsy test, PCR test, and CBC test are done for you.

I cut and pasted the below questions from Trey's CML Blog ( http://community.lls.org/blogs/CML ) to ask your doctor on your first visit or so.  You should read that blog when you get the chance.  A lot of great information.

_____________________________________________________________________________

QUESTIONS FOR ONC

Your doc should definitely do a Complete Blood Count (CBC) test. Your white blood cell (WBC) count will be the most important issue to discuss on this visit.

I would ask the following questions:
1) Am I making progress on my WBC count?
2) Am I showing signs of anemia (the tiredness issue)? If so, what should I do about it?
3) What blood counts are abnormal (high or low)?
4) Should I have a baseline FISH or PCR test for measuring future progress?
5) What are your qualifications for treating CML? (Sorry, an uncomfortable but important question)

_____________________________________________________________________________

Another big decision (at least for me), since you go back to work Monday, is whether to tell people or not.  I don't know if you've told anybody yet but I've realized that NOT telling everyone was a great decision for me.  Everyone is different and some people prefer to tell everyone (or at least the people they work with and their families).  The only person that knows is my direct supervisor (which i've asked him to keep confidential) and he has, and my mother.  I haven't even told my little brothers (don't want to put that mental burden on them).  No one else knows at work and I am more than fine with that.

For me, I see no reason why I should be asked how i'm doing every day because of CML.  I feel fine and am doing fine, and really don't want preferrential treatment because someone that doesn't understand this might think i'm "handicapped" in a way.  Everyone is different but i'm glad I didn't and life continues to go on normally.

[Trey]

You may want to read this information for the newly diagnosed.  Hope all goes well.

http://community.lls...tart=0&tstart=0

[donkatking]

Wow!  The amount of information you all have provided to be has been great.  I spent 20 years in the Army and you all remind me of the comradeship of my friends over those years.  Oh, I'm down now but I am a fighter, I am not a quitter.  Alot of stuff to go over and absorb.  Gotta make myself that way now.  I wanna be informed and you all are getting me that way.  I'll have questions for the doctor tomorrow and that will help me.  So far he seems very knowledgeable.  It was really funny as a few years ago I had a pulmonary embolism and was on warfarin for a year due to that.  He was same doctor I saw back then and when I walked into his office after two years he remembered me.  The kidney stone this time was maybe a God-send as if it hadn't happened they would not have found out about the CML.  He got me into his office the next morning for a bone marrow aspiration which confirmed what he had thought.  I was so very scared and just down.  They admitted me to the hospital due mostly to the kidney stone issue, being just worn out and I know depressed, and got me started on Glee vec while i was there.  It was his office who helped me get the Tasigna started as I didn't know if my insurance would cover it.  Thanks to the 20 years in the Army, being retired and having Tri-care.  (Don't know how budget cuts from the Government later on may affect this)  So far everyone has been very helpful and all of you fall into thir group.  Maybe somedays while I travel this new journey I will be able to maybe meet and say hi and shake a hand (hugs accepted).  As I have questions I will post them out here and I will let you know how I am doing.   Now to get all this information together for my appointment in the morning. 

[Susan61]

Hi:  Glad you joined us.  You sound positive already since you read all the responses you got.  I will not repeat anything already posted, but you got some real good advice and information.  I was diagnosed in 1998, and just started my 13th year living with CML.  I have been on Gleevec since 2000, and I do have side effects still to this day, but have been undetectable now for 7 years.  Its the initial shock when your told its Leukemia.  Nobody forgets that day that they were told, but we can share our experiences years later with people who are new to all of this.

     I was just diagnosed with a blood clot, and just got out of the hospital 3 weeks ago.  I was put on Warfarin, and I think I am having a reaction to it.  Have to see my doctor tomorrow.  Different medications do different things to people.  I am having terrible stomach issues from it, and thinking maybe I need to get off the Generic and go on Coumadin.  Maybe you can help me as well.!!

     There is always someone here to answer your questions, or if you just feel like venting about how you feel is just fine.  We all do it.  We are here if you just need to talk too.  Ask your doctor as many questions as you feel you need to, so you learn everything about CML.

Susan

[donkatking]

Hello Susan 61--it's nice to hear from you.  I too remember when I took warfarin when I had a bloodclot a few years ago.  Took the medication for a year.  I had a period when I took the Lovenox shots twice a day.  Either my wife or me would gove those shots.  While in the hospital this time the doctor had them give me the heperin shots three times a day.  My belly looked like a war had been fought on.  I was taking Glee vec during this period also.  They only geve me the medication as a precaution since I had had a blood clot before.  If it caused me any side effects I don't know what they would have been?  This might be a good question to ask my doctor when I see him tomorrow.  I hope that maybe you'll get to feeling better soon.  This was my first day where I felt pretty good and had limited dirarrea.  We'll see how it all turns out when I get back to work tomorrow after my appointment.  I don't know much about all this but the kind people who have contacted me have given me lots of info to browse through.  Ever want to just chat let me know and I'll send you my email address.  I believe that takling and trying to get things off your mind does a works of wonders.  I had just bought a new camper for this upcoming camping season and hope that I will get lots of use out of it even while dealing with CML. Think I will hve to take up somekind of hobby also.  I don't wanna drive my wife nutty--think I have done eouugh of that over the years.  But I wisk you a good day to come and alot more to come.  Thanks for you concerns with my CML diagnosis.  It is appreciated.   

[jrsboo]

Hello fellow camper!!!

I bought a 46 year old 12 foot travel trailer the day after being diagnosed (Sept. 2010).  It is what I do for "fun" (it needs a TON of work done to it--think stinky and covered in spray paint), and it takes my mind away from nasty things and lets me focus on the future.  I am an intrepid northwest camper (lots of rain)  with a 97 pound dog who always finds the middle of the cot/sleeping bag/air mattress, and forces me to sleep "around" him.  Thus the trailer purchase, a place to sleep where we can both be comfortable.

On Friday I had my first pyschiatrist visit (I am taking full advantage of the support of Seattle Cancer Care Alliance, a move I heartily recommend).  And she thought it was hugely significant and a good sign that I had made such a choice, giving me something positive to think about.  So no need for psychiatrist according to her!  Yipee!

So good for you for buying your camper!  It shows fortitude and intelligence that you purchased it!

And good to hear that Tri-Care is as good as I had been led to believe.  I am an army wife (reserves) and am counting on Tri-Care in about 12 years to take over after husband retires from primary job with the railroad. 

As everyone has said, this is a great board to have found.  There are huge amounts of support and information ready and waiting for you here.  And when no one else understands, we are here, understanding, and standing in the same pair of shoes/boots/pumps/sneakers as you.

Warm wishes for a speedy ramp up and smooth sailing on your Tasigna journey.

Caroline

[donkatking]

Thanks for the nice letters from Billie murawski and jrsboo.  Both brightened up my day alot.  About camping we just bought a 19 ft Nomad Joey and we usually like camping in the state parks here in Indiana.  With gas prices up so much over the past few weeks think that's where most of our camping will be done.  I also have a camp wherer I have a 21 ft trailer set up on two lots which we use through out the summer and visits with our friends down around North Vernon.  I have all the comforts of home there and it's good to get away on a quick weekend.  If you ever get to Louisville in April, they have an airshow and a fireworks display that makes most look timid.  Start of the Kentucky Derby week festivities.  Usually that's about the farthest we ever get away.  Ever get over this way your more than welcome to stop in an visit.  Through this ordeal so far my wife has held up well but she hold so much in.  You really have to drag things out of her and that is a concern.  She has been wonderful through all this so far and I couldn't love a more caring and wonderful person.  I hope to maybe get her on her with her questions as I as so sure, as with me it will help her also.  I may have the disease but we both share it even if we don't want to.  My doctor's appt is in a few hours and I have taken all my medication and will be there early.  From there it will be back to work.  I work with the greatest bunch of people at the defense Finance and Accounting Center here in Indianapolis.  Some already know about the CML  but I will let them all know and I will tell em it's OK to ask how I am as it may be a question I'd want to hear if I have a bad day.  I've been know to be snappy and will never let this be an excuse for any bad behavior on my part.  I will have to have it documemtated through the health nurse so if something was to happen that know what meds I am taking and whom to contact.  They are pretty good with this kind of stuff.  I work in a building with 4000 other people (2d largest building next to the Pentagon).  Got alot to learn and have questions for the visit today.  I thank all of you so very much.  I think of all of you as extended family and like that alot.

Donald King

[jrsboo]

Dear Donald and Wife (he forgot to tell us your name),

Thank you for the very kind invitation, you never know, the dog and I might just take you up on that. 

I find that the cancer centers usually have support groups for spouses/caregivers. 

While I haven't been to any of them, it is a resource for your wife.  And there are plenty of support groups for you too!

Caroline

[donkatking]

Well my doctor's appointment went very well today.  My white blood count had dropped to 20000 and the doctor was very positive it would be back to within normal very soon.  Looks like that Tasigna does its job.  I asked questions of my doctor whom answered every one.  He had another patient with CML in his office at the same time of my visit and they agreed to meet me.  It was very nice of them to do so.  The big D seems to have run its course and I hope it doesn't come back anytime soon.  The storms last night kept me awake with all the tornado sirens going off so a good nights sleep I did not get.  But after my doctors appointment I went to work and put in a full days work at a much slower pace that I would usually.  It felt so good to be back at work as I felt I was doing something.  Oh, I'm very sorry for not introducing my wife--her name is Katherine and she is my best friend.  She is a very nice and special person.  Wonder sometimes how she ended up with me.  But anyway my day went very good and I am going to get a good nights sleep tonight as I just don't feel stressed like i did a few days ago.  Thanks to all of you for sharing your experience  and providing me the information i needed.  You all are very special and believe me when i say I consider all of you an extended part of my family.

[Marnie]

Hey, Don. . .

Another "welcome to the group" from a fellow camper!  We are just getting our camper fixed up in order to sell it.  We have a Tiger, and we LOVE it.  But. . .we have moved on to motorcycle touring, and so the camper just sits in the driveway.  Right now, I'm sewing curtains to replace the old, ugly ones in the Tiger.  We have 3 people coming to look at it on Sunday, so I have some work to do before the weekend!!  While we loved the Tiger for weekend camping/kayak trips, camping off of the motorcycles is an absolute blast!!  We did a 5000 mile trip last summer, and are starting to plan our trip to the southwest for 2011.  We'd been planning on riding across the country to do the Tail of the Dragon in Tennessee/S Carolina (check out the pics on the website of all of the 18-wheelers crushing cars when they can't make the tight curves. . seriously!) but decided that we just don't have the time right now to do that much distance in a leisurely way.  When we're retired. . . .

Best of luck on your cml journey.  We've all been where you are, and you'll find out that you eventually settle back in to a normal life.

Marnie

[donkatking]

Quick update----feeling alot better.  Only small problems I am having is some ankle pain and still can't sleep good.  I will talk to my Onc on Monday about this.  I feel so much better.  I have now completed my first week at work and all has gone well.  Made a few changes about how I go about things and my supervisors have been very supportive.  I want to thank everone for the good information you gave to me.  You are the best bunch of folks ever.  Next doctors appointment will be on monday and I hope for more good news.   Following all instructions on all meds I am taking to the letter.  Looking forward to warmer weather now and gosh, camping season is just around the corner.  Hope to continue to hear from all of you when you have a moment or two to do so.  Again thanks for all the support in this, the beginning of my journey with CML.    

[Susan61]

Hi:  I think your doing very well also.  Your taking one thing at a time, and adjusting your schedule so as not to overdo.  Just keep living a normal life as best you can.  You will get used to side effects, and they do get better.  I am not on Tasigna, but all the years of taking Gleevec I have learned to live with it.  Its working for me and a lot of others too. Glad you feel that you found some good support on here.

     Different things will most likely come up, and just ask all your questions.  Somebody always has an answer, because most likely they have dealt with the same problem.  That always makes you feel better too.  As much as I talk to my  husband and other family members who are all very loving and suppotive, its nothing like talking to someone who knows exactly what your going through and how you feel.

     Keep on doing what your doing and take care.