Hi Friends,

Sorry that it has been so long since I have posted.  I just got back from my regular two month PET scan and appt. at MDAnderson.  It seems like the nodules in my lung are metastatic but, are stable at around the .7cm mark.  Plus, I have a new area lighting up around my right iliac area in my pelvis which they also believe is metastatic.  I am at a point where I am trying to decide if I should continue chemo or move on to an immunotherapy trial.  I can no longer tolerate any type of Cisplatin or platin chemo drug so all I am doing now is Xeloda, the oral 5FU.  I have met with NIH about a promising trial and there is a possilbe trial I could do with Dr. Eng at MDAnderson.  However, at the end of the day, a trial is still a trial and the success rates are good but not wonderful.  However, I know that I can't stay on chemo for ever.  Has anyone had any experience with an immunotherapy trial?  I have been told that the immunotherapy can also cause bad side effects.  On the positive side, I feel good, exercising regularly and going to Italy in early October.  So, it just isn't fair that I have to struggle with cancer that won't go away.  But, life is not fair.  I try and I am pretty successful in just enjoying every day.  But, every once in awhile, the thought of only having limited time left on this earth overwhelms me and I get very sad for my family.  But, I am still  a lucky girl it could always be worse.  Thanks for all of your support

Olga likes this post.
3 people threw a punch at your cancer.
5 people sent you a prayer.
5 people sent you a hug.
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Diane sending you prayers and strength. I am also Stage IV but have no experience with immunotherapy. I hope others will give you the information you are looking for. Hugs XO
Are you on chemo? If so which ones? Hope you are doing well.
I did the standard 5 fu with mitomyocin the first time and cisplatin and 5 fu the second time. They don’t do any chemo for a single brain lesion, they just removed it surgically.
What about Car T cell therapy?
I have met with NIH who has a T cell trial but, I am not ready to go this route since it is so invasive. Holding this for a last resort. You have to have a certain marker in your blood to qualify for this trial and I was positive for the market so that is good to know for the future.
Marcia likes this comment
I wish I had insight and info to pass onto you. I admire your strength and attitude and I’m so sorry about your situation. I hope you continue to feel great and have the best time in Italy. xo
Diane, I am sorry you didn't get better news on your scan. I'm glad you are exploring your options and I hope you and your doctors will hit on one that will produce good results. It's good to hear that you are remaining active and feeling good. I hope you have a wonderful trip to Italy--I've always wanted to go there. I will keep you in my thoughts and prayers.
Love your attitude. The trial sounds interesting if you are up for it. I would love to hear how it goes.
Thanks Jill. If I start the trial I will give everyone updates as to who it goes and if successful.
Jill likes this comment
I’m glad you’re going to Italy and I hope you have a wonderful time! I’m sorry I can’t help you here, but I know there have been others who have done the immunotherapy trials - hopefully they will weigh in.
My wife had her external iliac nodes removed on the right side. She had a 3 cm tumor there, which is odd for rectal cancer to go there but it did. She does have some lymphodema in the leg now but it was removable. Is surgery not an option for you?
As of now, they say that since I have cancer in my lungs and right iliac area they don't think surgery is worthwhile because my cancer is systemic. However, my local oncologist said that if things stay stable for the next year, then they would consider doing surgery. Thanks for your input. Good luck with your wife.
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