8 replies to this topic

[reedgirl]

Just wanted to let those know who read and responded to my last sos...Dr Talpaz is still feeling confident with Greg's response to the medication and with his leukemia.  His thoughts on PCR test are once you get below .1 you are in a great state of remission and numbers do not really matter unless you hit that .1 or higher.  At least that is what he tells us, I hope he's not just saying that to keep us from worrying lol.  He feels Greg is possibly suffering with some type of virus causing him to run a low grade fever and feel more run down.  He also said it could be from drug toxicity.  Unless there is a change in his PCR test, looks like things will remain the same.  Whew what a relief.  Sometimes it's just good to get that reassurance to keep moving forward.  Back to see him again in 3 months

Audrey

[Marnie]

Audrey. . so glad to hear it.  Dr. Talpaz would not say something just to make you feel better.  He's a professional held in very high regard in his field.  What he says would be based on his knowledge and expertise. 

Glad that you can relax and feel o.k. about things. 

Marnie

[GerryL]

Good news Audrey, hope it is a virus with Greg and he starts to recover soon.

[reedgirl]

Thank you both for replying!! It is so worth the 5 hour drive, even in bad weather with somewhat bad roads just to hear him say your doing well!  I really think for both Greg and I, we jumped right back into a full speed of life after his diagnosis and getting him on med's that he could take that we almost forgot he has cml.  I think now it's finally catching up to him, the side effects of the drug.  He works around 50+ hours a week most weeks, think his body is finally telling him "enough" and that's why he's so worn out and run down, that and the virus of some sort.

What really surprises me is Dr Talpaz's response to the PCR test. I read about so many worrying about getting that PCRU and watching that number go from .000?? to .00??. According to Dr. Talpaz as long as it's below .1 your in a great state of remission.  How awesome for everyone on here who is below .1!! Whew all the worry for nothing

Hope you both are doing well and not suffering in this dreaded winter.

Thanks again,

Audrey

[tazdad08]

I stayed at full speed for about 6/7 months after diagnosis. Then i finally faced the fact that I am not that same person. 50-60 hour weeks managing a fast food place was not for me any longer. It does get to me from time to time, but.... I have learned that life is more enjoyable when I look at the positives. God has blessed me with an awesome family. It took this huge event in my life to make me slow down and enjoy more things than the almighty dollar. Dont get me wrong... being broke sux. but really taking the time to be with my family does more than make up for it.

[TeddyB]

Great news.

In a video interview i saw with Dr Talpaz, he said if you reached MMR (0,1%) then chances of relapse or progression  are quote "absolutely minimal"

So its not just something he is saying, stay positive

[reedgirl]

Jimmy,

  Thanks for your reply.  You are correct, what a hard lesson to learn about life, in a tough way!  Glad you have a great family and support group and are able to spend time with them and enjoy life more.  My husband is learning, tough as it is to cut back some and try to find more relaxing things to do rather than just working.  We own a family business, unfortunately 7 months after his diagnosis his father who was the owner passed away very unexpectedly.  So the business got left to my husband, I quit my business and went to help him.  We are fortunate to have a great group of guys to help, but it's still a huge emotional, mental, and physical stress on him.  We are actually planning a trip for a week to Florida now that we know things are still ok and Dr Talpaz gave us the all clear to go.

Hang in there, and enjoy your family.  You are so right, that more than makes up for the money!!

Blessings to you,

Audrey

[reedgirl]

TeddyB,

   That is exactly what he told us Monday at the appointment.  I really was worried about the leukemia becoming resistant to the drug or something happening with it since Greg has been having these drenching night sweats again.  Dr Talpaz said it is highly unlikely he would loose response, that it is highly unlikely anyone would loose response once they reach that .1 MMR response!!! Isn't that a HUGE relief to everyone!!!  He didn't say it was impossible, just highly unlikely, rarely happening.  Wow, we can all find peace in knowing that!  I know I needed to hear it!  He also told us they are in the works of developing another new drug....still more hope for everyone!!! How exciting!!!

Best to you,

Audrey

[Tedsey]

What great news!  Thank you for sharing with us. 

Tedsey