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Good news, bad news

taraHK
Posts: 1961
Joined: Aug 2003

The good news is that the result of the test is back and I am a candidate for Temozolomide (= Temodar = TMZ). That doesn't mean it's going to "work" -- but the test identifies those for whom it will NOT work. 

As some of you know, I actually had one cycle already, while I was waiting for the results. I didn't want to be on no chemo for very long, and the side effects of TMZ are pretty mild. 

The bad news is that my CEA is WAY up. Above 300. I have never had numbers like that. And, my symptoms have gotten a little worse (pain in shoulder and left hip). I may have some radiation to reduce pain in either one or both but decided to postpone -- because I have a really good friend coming to visit me next week and I want to be able to PLAY!

Just got back from a one week holiday in Hawaii so I really can't complain about anything right now! I was able to take gentle walks most days, go out to eat, bit of shopping -- and a lot of sitting and talking with ones I love. 

Just had cycle #2 of TMZ yesterday -- side effects not bad at all. As some of you are no doubt aware, this is a drug traditionally used with brain cancer but now having some success with colorectal cancer patients -- not sure if much published yet

Tara

manwithnoname
Posts: 390
Joined: Jun 2012

TMZ hope it works for you, FYI there has been a trial with Metformin + TMZ;

"New drugs and targeted molecular therapies are important for future therapeutics, but sometimes we must not exclude drugs already used in the clinic that might have remarkable results. Such is the case of metformin, a drug used for decades in the treatment of type 2 diabetes mellitus that has proven to enhance the effect of TMZ in the treatment of breast cancer and, starting with this paper, of brain cancer."

Just sayin...

janderson1964's picture
janderson1964
Posts: 1576
Joined: Oct 2011

I pray this works for you.

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am sorry to hear that you are in pain and that your CEA is going up.   Hopefully this new treatment plan will do the trick.  I am glad to hear that the side effects of TMZ are minimal.  How many cycles are you scheduled to do?

alex

taraHK
Posts: 1961
Joined: Aug 2003

Hi Alex - thanks for your warm words. I'm not sure how many cycles I'll be having. I usually have a PET scan after every 4 cycles. But this drug is taken just once a month. I guess I'll keep taking it so long as it "works" (in my case, stable = good!) or until something better comes along. 

Tara

jen2012
Posts: 1196
Joined: Aug 2012

Good luck Tara...hope it works and you feel well. Have fun with your friend next week!

annalexandria's picture
annalexandria
Posts: 2204
Joined: Oct 2011

What a wonderful place for rest and healing.  And I'm glad to hear you still have treatment options.  You really are an inspiration to everybody on this board.  Please keep us posted and let us know how the new drug works out for you.  Sending hugs from Seattle~AA

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Scheme Tara! Hugs!

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

so glad that you are a candidate and can continue.  Keep reporting in on what the side effects are for you; hope that they continue to be mild.  I love your attitude and your desire to PLAY ... traveling, walking, going out, shopping, being social ... just wonderful.  The high CEA is concerning and so are the worsening symptoms but it sounds like you have the radiation option and also the potential for the TMZ to bring those numbers down.  I wish you the best. -- Cynthia

Deena11
Posts: 193
Joined: Nov 2012

Good luck with the new treatment!!  Have fun with your friend. 

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i hope this works for you. that is great you could go to hawaii. prayers for you.

hugs

judy

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

I'm so glad you got to have your Hawaiian holiday. 

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

Tara,

I am glad you had a great vacation.  I am sending hugs and prayers that you can get some relief from the pain.  You are such a brave woman.  I will never forget how helpful you were to me during my early days of treatment.  I will always remember your kindness.

Love,  MaureenSmile

thingy45's picture
thingy45
Posts: 576
Joined: Apr 2011

I so hope it works for you. Great you had a nice vacation and a good visit with your friend.

Hugs, Marjan

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