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9 years this weekend !!

Oh wow.   This weekend its nine years since my Dx day.  After all this time I still remember that horrid day, do any of us ever forget it. 

Here I am enjoying life in a way I never knew was possible.   These are the best things in life for me,  grandchildren and family,  time to stand and stare, space to think, breathe, laugh, and play. 

All those years ago I was a workaholic, driven and fraught.  Not any longer.

CML in some very strange way has been good as well as terrible for me and the family.

Have a glass of vino with me this weekend, and raise the glass to the wonderful developments in CML treatment, and the people who have made them possible. We have moved so far from the only treatments available then, interferon or transplant. Now there are options for many of us.  Long may the researchers work to find a cure.

Love to all

Pennie. 

A truly inspirational anniversary! Conratulations on your achievement and I will be raising a glass to your continued good health...

 

ADJL x

Hi Pennie, I too shall raise my glass to you tonight, congratulations to you on this anniversary & may there be many more to come! have a very good weekend.

So close to 9/11/01 as well must have been a tough time

i also agree that getting the CML dx has been one of he worst and best things to have happenned to me.

rob

Dear Pennie, what a journey its been- well worth you and Bill celebrating with a drink- or even 2!  Great to hear your fighting spirit has not been diminished over these last years. We have had ups and downs but in the end we are fortunate to be so near a cure, but more importantly we are able to live a good quality of life while that 'cure' is so tantalisingly close. CML has become an exemplar for how to develop effective therapies that do not penalise the 'patient'. The research and development of TKI's over the last 12 years means that the majority of CML patients who have access end up with a good quality of life and more or less a 'functional cure'. There are still many barriers to overcome if all CML patients are to benefit from the 'miracle' that started off with imatinib. As we go forward, I am sure there will be more hurdles, but let us all remain positive for the future. 

Best wishes to you and your family,

Sandy

Hi Pennie,

Congratulations on your 9th year of fighting with the disease, well done. I was diagnosed in May this year. I am Glivec 400 daily. I would like to know if CML has effected you in any way , I mean your health or your daily routine life. Nine years is a very long time. What drug are you taking? Has side effects of the drug caused you any other health issues, such as liver, kidney or heart problems. I am just worried about the longer term side effects of such a powerful drug. I have read on glivec’s website that some people taking glivec reported to have developed some sort of heart problems. Have you come across any of these problems or do you know someone who has been taking the drug for a long time and developed any major health issues.

Any information or advice is appreciated.

Thanks

Shaz

WOW!  I was DX on the 5th of September, 2001, I thank God gave me something to think about when that happened.  I quickly got out of my PJ's and decided I was still alive no matter what I had to live with.  I was DX in 1998 with step pneumonia, had a pneumo theraux and found out I had HIV and Diabetes Insipidius.   I'm now on 800mg of Gleevec daily along with the other meds for the HIV and diabetes, I feel like I have had morning sickness for 12 years.  But that which does not kill us!  I find it hard to complain to family and friends thus keeping it all in, after I saw this site today  I thought maybe talking to others who really know what it feels like dealing with Cronic DX's wouldn't make me feel so ungreatful.  So thanks for letting me vent a little, I have great faith and know I'm here because God has full control over my life, but somedays  when I think of giving into my disease's, I quickly remember that day in September, not my D-day, but those who lost so much more than living a life with a little nausea, it quickly reminds me how lucky I am.   So happy Anniversary, and many. many more.   

  Billy,  great 2b alive!