Re: My new onc

Mary,
I did not have that issue with my SBRT. When we did the simulation they asked if I was breathing normally for me and I said as long as I stayed calm I was. And I think the radiation angles must have been different? So they did not clamp my breathing off, just told me to stay calm which I mostly did... with a little help from my Xanax friends! BTW, my resting breathing is extremely shallow.
Feel free to call me if you need to talk this through. 2676259873. I will warn you that I am battling over precerts, referrals, etc right now so may not be able to answer or may have to interrupt the call.

My tests for the trial begin on Tues!! If all goes well and I am accepted, they will schedule the biopsy and the race is on! I'm very excited about this, as I believe God led me to this.
This is how certain I am: I have been wearing a "One Day At A Time" charm for 2 years. It was given to me with the stipulation that when I no longer needed it I gave it to someone who does. Last night I met a young woman who is 1 year out of her 2nd battle with breast cancer. She was also beaten with a baseball bat and has brain damage. She now has my charm.... I figure I am in Gods care and don't need it anymore, and I was compelled to give it to her last night.

And Lainy: guess what? 2 more pennies after I did that! As for who they are from? My grandmother passed 1 month before my fight started. I actually believe its God, but if not, then I think it might be her. She was one strong lady. She passed at 98 years old.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new onc

Wow, Kris, I can't wait for Tuesday either! What a wonderful thing you did by giving that woman your charm. I do believe it is your Grandmother dropping the pennies, I believe God is working the Medical parts!
A Teddy penny story: One morning after I was DX with the UC, I awoke with a song in my head, "Pennies From Heaven". This tune was extremely popular about 10 years before I was born and I never really hear it except in a 1930's movie. Later that day I called T daughter in Palm Springs and was telling her how weird to hear that song as it meant nothing to me. She was astounded and said, "Dad used to sing that to us kids when we were little!".  Its all about how things turn around and get better with pennies from heaven!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new onc

Kris,

Thanks for the offer to call you but I think I'll be okay and wait to see what happens on Monday.  You have your hands full with what you're getting ready for and I don't want to take you away from that. 

I hope all goes well with the testing on Tuesday and you move along quickly in the process to get started in the trial.  This is very exciting and I look forward to hearing from you as you move along.

That was a very selfless thing you did giving your charm to that woman. 

Mary

Re: My new onc

Hi all.
I updated in the clinical trials section, but just wanted to say that 4 weeks in and my biggest complaints are weight gain, bloated hands and skin rashes/dryness. Not bad. And the numbers for my CA 19-9 are lower! 0-37 is normal. Mine is now 39.3. This is the lowest it's been! And the rest of my bloodwork is pretty good. Yay! In 4 weeks I find out how well everything is going... Ct scan set for June 14 and results on June 17.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new onc

Yay indeed Kris, superb news!! Looking forward to hearing your next scan results and you know I'll be keeping my fingers crossed for you as well!!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My new onc

Great news Kris!!  I will look for your post in the good news section on the 17th!

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My new onc

Kris...the clinical trial you are participating in - a phase I study -
http://clinicaltrials.gov/show/NCT01285037
is to determine the toxicity level and being that you are in Group B to also determine the effect it has on your tumor.
Although, a phase 0 study has been conducted on about 20 people or less, this trial is to pinpoint side effects and at which doses such occurs. Kris, don't hesitate from speaking with the Primary Investigator regarding any questions you may have.
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new onc

Oh, don't worry. I'm reporting everything!! Some of them MIGHT be side effects! The skin problems (which are minor compared to the alternative) are probably side effects.
The weight gain, coupled with the lower CA 19-9 numbers, is hopeful, according to my onc. This hopefully means the cancer is very inactive!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new onc

o.k., I will quit worrying (I think) as you are on top of the situation.  The reduced CA 19-9 expression certainly is something to be thrilled about. You go, Kris.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new onc

kriss...give it all your might...i have a good feeling

Lou

Re: My new onc

Kris
You are selfless indeed, for participating in this trial which will help others in the future all the while feeling great about what it can do for you. The charm necklace itself is merely a symbol of compassion and it is lovely and fitting that you have passed it on to a soul who needs this right now.
Keeping you in my thoughts for continued low ca 19-9 and md side effects!
Willow

Willow