6 replies to this topic

[cnamrog]

Hello

I was diagnosed with CML in July 2012.....  I started on Tasigna the first week in August and managed to get my WBC back in line in just three weeks.  I attribute this to a positive attitude and great support from family and friends.  There is no time to feel sorry for myself.  There is no time for tears.  It is all about getting better and feeling the best I possibly can.   I will not let the CML take over and win.  I am only 40 and I have at least another 40 years to live!  AND I WILL!!!

Yes I find that I get tired and sometimes I feel like I am "hung over" (and I am not drinking!) -  Its the only way I can describe how I feel some mornings.   Yes some days are really tough emotionally but I will not let this CML win... I refuse to let it take over my life.  I am determined to carry on as normally as I can. 

For anyone who is feeling blue, tired, and just over all not like their old selves-  Please know that I get it.... I am thinking of you all and you are not alone.   Do something special for yourself-  get a manicure or pedicure.  Go on a hike, write a letter to a friend.   Keep moving forward and know you are not alone....

Colleen

[Susan61]

Hi Colleen:  I do not think I have seen any previous postings from you, but I hope your joining our group so you can share some of your Positive Ideas.  Everyone could use some positive thinking.  Yes, we all have good and bad days.

We talk about other problems that we might have that just aggravate the CML we already are dealing with.

     We can win this battle due to all the latest treatments that are available now.  I have been winning this battle for over 13 years, and we have many others who have been living with CML for a long time.

     May God Bless you with another 40 years plus

Susan

[cnamrog]

Hi Susan

I am new to the site- just joined today...

Do I need to do anything to join the group?

Thank you for writing - to hear you have been winning for 13 years is so inspirational to me!

Colleen

[Susan61]

Hi Colleen:  You signed on, and thats all you have to do.  You can read others postings, and then respond if you want to.  You can read some to see how everyone is doing with their particular TKI drug.  I have been on Gleevec since Oct. of 2000, and even though I  have side effects all these years I feel it is doing its job. 

     Just ask any questions you might have that will come along as you proceed with your Tasigna.  We have a lot of people who are on Tasigna, Gleevec, and Sprycel.  You will have days where you will feel like venting about something you might be going through.  Please just feel free to write whatever you want.  There is always somebody who is probably going through the same thing.  That is what is so good about this discussion board.  I find that I can talk to my friends and loved ones, and they can be sympathetic to my fight.  They just do not truly know exactly what I am going through like everyone here who is also living with CML.

    We have a great bunch of people here.  We cry together and laugh together, but best of all we support each other through it all.  Welcome to our Group.  Hope we get to know you better.  We also have all ages on here.

Susan

[mariebow]

That is so sweet. Thanks

[alexamay09]

Hi Colleen

What a lovely positive posting.  I was diagnosed just a few weeks ago and awaiting confirmation of accelerated phase. Am on nilotinib (tasignia) and still not feeling too brilliant due to enlarged spleen and liver.  However, I visualise every single day that I am destroying the cancer cells and am getting better.  There's a good book by Dr David Hamilton about using visualisation to help heal.  It certainly can't do any harm.  Having a positive attitude is really important, although I have to say it is harder when you are not feeling well

alex

[LivingWellWithCML]

I love this post ... made my day!  With TKIs, the power of positive thinking, and some luck -- so many of us can count on living a long and healthy life.  I get some of the Gleevec side effects, which isn't fun - and I injured my ankle from running and had to get surgery in July, but each day the ankle is improving post-op, so I am hopeful that I'll be lacing up the running shoes again in the next couple of months and hitting the road again.  There is no better feeling than to complete in a road race and smoke other perfectly-healthy guys in my age group (early 40's). :-)  It's all part of the new lease on life that TKIs can provide...

Lovin' the positive attitude ... keep it coming ...