32 replies to this topic

[TroyLynn]

Oh Susan, congratulations!  Thank you for your update, your motivating wisdom, you are indeed inspiring.  Merry holidays : )

[Pin]

Congratulations Susan, and thank you for being there for all of us, especially the newcomers. It really gives us hope to see you doing so well, especially coming from a time where these medications were not available.  Pin xxx.

[kreuz]

Hi Susan, congrats on your 13yrs victory! I'm just dx cml last Oct 2011,...26yrs old. I hope i can long term survive with cml and not affect my normal life.

[Susan61]

Hi Kreuz:  You are very young, and you will be the one to see what all this new research is accomplishing for Caner in general, not just CML.  Years ago there was not much they knew or could do for CML, but now they know how to stop it from progressing.  More will be learned from that, and we you will see so many new things.  Just try to think positive thoughts.  I know it can be hard sometimes to do that, but it helps your mind and body in so many ways.

I need to catch up with all these new members coming on here.  It is hard to remember which drug they are using, and how they are doing with it.  You Will Survive.  Just Believe It.

Susan

[Fas]

Susan,

Sorry I am a day late to the party.  Been dealing with some of those challenging difficult times lately.  I just began frequenting this board the last few months and have often read your posts.  You words always offer hope coupled with kindness and compassion.  As a long term survivor too I know the importance of staying the course and getting through those difficult times.   May the hope and kindness you offer others come back to you 10 fold.  Congratulations on lucky 13.

Continued wellness,

Fran

[Susan61]

Thank You So Much.  If you are a long time survivor, and just reading the posts please join in as you probably have so much to share yourself to help others with their concerns and questions.  New members are so confused and scared, not knowing what to expect down the road.  That is why I share my experiences.  I know how I felt at first, and was so glad to find a discussion board to talk to people who truly knew what I was facing each day.

Wishing You Continued Wellness Also

Susan

[jjg]

Thanks Susan, it's reassuring for all of us to hear from a long termer. I'm 12 and a bit years behind you, the lab signed off on my positive FISH a year ago today but we remained not so blissfully ignorant until the 21st.

Keep on keeping on!

Josie

[janner25]

Hi Susan ~ Congratulations on 13 years!  Such an amazing feat!  I agree with everyone....you are an inspiration and although each of us has had our own journey in the CML battlefield, we all look to you and others to calm our fears, be our cheerleader, and be there for a good laugh!  Keep up the great fight!

Janner

[Tedsey]

Long life to you, Susan!  I say this with great emotion, admiration and gratefulness for all your support.  I think I can speak for all of us saying you are one of the most valued members on this board.  Thank you for leading us to have hope, hang on, and hold our heads up high. 

A very heartfelt congratulations! 

Teds

[Jamar]

Congrats Susan,

You are truly an inspiration to all of us. Especially to anyone coming to this forum for the first time.

J

[pamsouth]

Susan61

Regarding your POST

" I started, and I saw people who are still here who did not even get to PCRU. There are a lot who have maintained a CCyr for years without getting to PCRU.

That is why I tell everybody not to try to push to get somewhere too quick.  We are all different in how these TKI drugs work for us.  I truly believe that most of the younger people who are just being diagnosed will see the cure, even if I do not get to experience that day."

I couldn't have said it any better, and my new Oncologist agreed that even if we don't reach a deep response as long as we stay somewhere in the middle of the chart he drew, that is Ok with him, as long as my counts are not continually going up, which would mean, better do some more labs and see what is going on.  He said he does not necessarily go by the guideline, as my previous oncologist and other Oncologist may. Also he said in the end, it is my choice wether or not to change drugs or go off TKI.  He has patients that do go off their drugs, but he said after about a year they usually go back on them, but that is a whole different thread. He did say he had one patient that could not get the TKI I think it was due to financial reasons, because I told him I would really like to stay on Gleevec since I had been on it 6 years, and didn't know what to expect on another drug and that Gleevec would be generic according to LLS in 2015.  I told him my other ONC had mentioned a year ago there were newer better and I told her then I wasn't interested in newer or better as long as Gleevec is keeping me stable. 

I am glad I went to him for a second opinion. as I think it is important to go to a doctor you can talk to without being intimated or you can have a dialog. He is much different then the other doctor.  As  long as my labs stay consistent I am not going to be worried about taking more milligrams or changing drugs.

Thanks Susan, for sharing, it is good to hear from someone who has survived this for 13 years and on Gleevec to, I think?

It reminds me that I am blessed to have been in the Gleevec Generation (2005).  My husbands mother died in 1962 at the age of 41 of Leukemia, he was 21 years.  He has never forgotten her or that terrible last week that she died.  He said he didn't know which leukemia she had, but she had only been sick for about 3 months, anyhow I would guess she probably had ACL, it was a terrible pitiful death that he watched.

My husband was kind of a shocked, when I was DX with Leukemia, as that was what his mother died of.  Odd co-incidence.  She did not have the luxury of an early dx or newer drug therapies.

The doctor kept telling, Mr Sprugeon remember your mother had the bad kind, your wife has chronic and we have a new drugs out, that your mother didn't have in 1962.

I will bd 64 this New Year, I have a Twin Sister, too.  We were the first New Year Twins ever born in Grant County Indiana. 

So I am thanking the LORD that I am celebrating another birthday. 

I am actually thankful this incident came up with my old oncologist or what have never went to this board and discovered so many wonderful patients to that I can vent if I need to 24/7.  Most family and friends to understand the disease so there is really no one to talk to when I run into a new hurdle.

Merry Christmas.

[nathaliece]

Susan,

I have been away for a while and just saw your post.  Congratulations!  I will never forget posting my first message seeking answers and assurance.  You were the first to respond.  I remember feeling hopeful for the first time after my diagnosis when I heard your story of success.  You have been such an inspiration for me.  When I have shared the news of my diagnosis with friends and family and I see the grief in their facial expression, I almost always tell them about you and how you have successfully fought CML for 12+ years and continue to do so.  So, not only have you helped many of us on this board but our friends and families as well.  Your grace, kindness and thoughtfulness is so appreciated.

Happy New Year!

Nat

[Susan61]

Hi Nat:  Happy New Year to You Too.  I pray for some great new breakthroughs in this New Year Ahead for many things, but especially for CML.  They are so close to better ways to treat CML. 

     You made me feel so good sharing your feelings about any inspiration that I may have given you to fight this terrible disease.  Its not always easy to keep a postive attitude, but as each day or year goes by and you look to where you are now and not where you were it amazes you. 

    You do not get over the nervous feeling everytime you go for that blood work waiting for those results.

    I have to go get my PCR testing in a few weeks, and I will post them.  I do that to help a lot of the new people to see what can be accomplished.  I also like to remind people that when I started this journey, I only had Gleevec. Now there are other choices if the Gleevec does not work.  There is one in clinical trial now that is very promising.

   I hope you are doing very well in your progress.  Glad you posted.

Susan