2 1/2 weeks in Houston....maybe....

I called Jackie at MD Anderson as Dr. Javle brought my case before a panel to see if they had any ideas up their sleeve. Dr. Crain, who is over the Proton Therapy Program has decided they can do proton therapy without getting too close to my heart. We first, have to get it approved by insurance, and I also want it to be after we are back from our family vacation. The part they want to radiate is the small tumor in the dome of the liver that they could not radiate before due to being too close to the heart.Last spring, they radiated the large tumor and it is now shrinking/less FDG avid. In some cases, I have read that proton therapy can give you a 5 year survival rate which is about the survival rate they give you with a resection. AND....maybe if it all worked perfectly as I could only hope, the clinical trials for my two mutations will be closer to being approved.....or another drug will come along before my kidneys or liver give out from all this radiation/poison being put into my body....and offer me MORE time. Life is all about TIME.

I have searched the internet but mostly just unsure what to do. I think I want to do this. It could give me a break from Chemo...maybe not. I would get 15 treatments in a row and then be done. This is the radiation that pinpoints the tumor and leaves all of the surrounding area and organs alone.  I would really like to find a family we could stay with or we might, as a last resort stay at the St. Dominique Village. It is basically a nursing home but has a few rooms for people being treated at M.D. Anderson. Not a lot of room to cook....so I don't know where we will stay.  A lot to ponder on before we even make the decision to take this route of treatment. Any suggestions or offers are appreciated if you have an extra room. We would be willing to buy our food and maybe pay some rent for staying in their house, shed, garage, doghouse....kidding.

My family and I have a lot to think about over the next couple of weeks....keep us in your prayers and ask God to lead us in the right direction with this big decision. Any of you cholangiocarcinoma patients who want to chime in here are more than welcome to....especially if you have had proton therapy.


Hugs and God Bless!!
Patty

The best news from Dr. Javle today!!

I was a little scared to go to M.D. Anderson because for the last (almost a year) I have been getting CT scans instead of PET scans because insurance said the PET was not necessary. Well, we got it all switched back to where they did a PET and chest X-rays this visit. A PET shows every spec of cancer or is a lot more detailed. We flew in to Houston on Tuesday late afternoon, had supper at the Rotary House, and early in the wee hours, Pat was sick. Throwing up, belly ache...you get the pic. He thought he had food poisoning but he came home tonight and is still feeling a little rough. Let's hope he keeps it to himself. It made for a long day Wednesday with my chest x-ray at 8 am and on to the PET from there which is about 2 1/2 hours. We spent the rest of the day in the hotel as Pat felt horrible. That night, we ordered pizza and wings, and just chilled. Thursday is the longest of time until my appt. at 10 am.....but it was 11:30 before we were talking to Dr. Javle. When he walked in, he asked how I was doing. I replied back to him that it was his job to tell me how I was doing. DRUM ROLL PLEASE: Dr. Javle states my large tumor is dying, it is over 50 percent less active than a year ago. This is the part that got radiated a year ago and they didn't think it worked. Well...it did and there is a decrease in the tumor size and FDG avidity. The maximum SUV within the tumor is 5.3 in the current scan and it previously measured 11.1!!!  Dr. Javle states my cancer is currently under control. I do have a small mass at the dome of the liver that is lighting up meaning it is cancerous although not very active. It has been there for over a year (approximately) but has not grown.  He will take my case to review this Tuesday with his peers and they will discuss my case and any suggestions to get rid of that little booger of a cancer mass....I am to call and talk to Dr. Javle or Jackie (his P.A.) on Wednesday. 
If you have been reading my blog since the beginning, I had radiation in Houston last spring for 28 days and it wasn't until I got home that it kicked me into next MONTH or maybe TWO MONTHS as far as no energy and just plum tired. So, after the radiation, I waited 6 weeks, then went back for a scan only to be told they didn't think it worked. Well, exactly where they radiated is where the tumor is dying. DR. Javle has already called Dr. Das who was my radiation oncologist, and he said the little mass is too close to the diaphragm and heart to do radiation again....so on to another plan, I hope.
When I heard all of this news, I just sat there.......I was good emotionally until I was telling my sister, Sarah the good news that I kinda choked up. Then I got my composure back together. Then, on the plane, I was thanking and praising God for ALL He has done for me and tears just came from nowhere. I turned my head so Pat couldn't see me but I was sobbing quietly while way up in the sky and gliding along like a bird dodging clouds. I have so much to thank God for...well...I have everything to be thankful for because of Him.  Thank you, thank you, thank you, Jesus!
I did meet another lady (probably 60) in the waiting room that also had intra hepatic cholangiocarcinoma....they told her she had less than 2 years to live. She has a different doctor. I am SO thankful I have the doctors I have. From local ones, to the ones in Springfield, Effingham, to the ones in Houston, they are all just great physicians. I am blessed! I am also blessed with the 100's of people, churches, friends that pray for me~thank you all and please keep praying. IT IS WORKING!
It's 11:03 and I am calling it a night. Just wanted to share the great news I had today. I couldn't have asked for much more. With this cancer, baby steps are even good...as sometimes you start taking steps backwards with this disease. I'm not going backwards if I can help it!!

HUGS and God Bless~~

Patty

Houston bound this week.....again!

Three months sure do pass quickly when there is so much going on in these summer months. But this week is the week I will fly to Texas (T-TH) for my PET scan and visit with Dr. Javle.  In months past, my insurance refused to let me have a PET scan and I was given no choice but to get chest x-rays and a CT scan. Dr. Dy in Effingham has already warned me to be a little careful as they will be comparing a CT scan from 3 months ago to a PET scan this week. The PET shows every little speck of anything suspicious but with a CT, it is not as clear or sophisticated. Dr. DY says they can compare the CT scan from 3 months ago to the CT part of the PET scan they do to make it more even in detail.  But maybe I need to know about every little speck to jump on it now and fight it like a dog.....I dunno. I guess I have wanted this PET for so long (that's what I started with until insurance denied paying for them) because it is more detailed but now that I have gotten it approved, I am kinda dreading it. But God is right beside me and I keep telling myself that. It calms my nerves down and off we will go tomorrow to Houston!!

I want to discuss with Dr. Javle, the clinical trial that is being done at all the major cancer centers that is specifically for my two cell mutations. The clinical trial kills the bad cells before they make cancer so my body would quit making the cancer cells as this chemo would kill them off quickly. IF it would work-GREAT. If it didn't work, my cancer could grow. But this trial is just for MY TWO MUTATIONS. That's it.........so if it kills off all the bad cells before they have a chance to make cancer cells, then maybe it would start working on my cancer cells in the tumor???  I am not sure of all this but this is the way I understand it.  I would like to ask Dr. Javle to print off (from PubMed) all the info so far on this trial. Both of my cancer drs' are BOTH impressed with the results thus far.....so my heartstrings are really telling me to take a chance here. I would have to drive to St. Louis ALOT as they are the closest one doing the clinical trial (this is about a 2 1/2 hour drive for me).....so it would make for some long days. But some long days in my life are better than no days left in my life.
My drs say that I will not die from my cancer in a round about way of saying it....instead, I will probably die of liver or kidney failure from all the poison (chemo) being pumped into me. My numbers are holding steady in that area but it could all change in a heartbeat. Only God knows that answer!!

So, as I start my week, I ask for prayers for a safe trip (no plane crashes please), I ask for good news that I am stable or the tumor is shrinking. I pray it has not traveled to other areas of my body.  And no matter what, I will come back, go on vacation in 3 weeks, and have the time of my life!  God is good and He is in charge. I will accept whatever the news is and move on to fight the next fight on this journey of cholangiocarcinoma.

Life is all about TIME, so get out there and enjoy it while you can!!

HUGS and More HUGS!!

Patty