Wednesday, June 24, 2009

Optimism prevails

We were both privately worried and a bit nervous about the visit to Stanford today. We both kept it to ourselves until after the appointment.

Based on mom's recent tests in Salinas, her CA19-9 level was elevated from her last check up several month ago. What the numbers showed were that her cancer activity had decreased after a few month of chemo to very low levels but had since had a recurrence and increased again, although not back to the original levels. Dr. Koong said that it appears the Gemcitabine (chemo drug) had run its course and was no longer having as strong an effect on the tumor as it was before. This seems like bad news--increase in cancer cell, and decreased effectiveness--but this is when the first of the good news came. What we didn't know is that there is another chemo drug she can switch to now which has proven to be very effective. Xeloda and Oxaliplatin (combined, referred to as Xelox) are commonly used for colorectal cancer, but apparently they are very effective against pancreatic cancer as well. According to Dr. Koong, there is very recent info that has come out within the last few month from Europe that says Xelox may be even more effective against pancreatic cancer than the Gemcitabine is. Instead of being used as a secondary drug it may begin to be used as the primary drug. This means that although mom has run her course of Gemcitabine, the most effective drug may have not even been used on her yet. So, we will be looking into this Xelox and starting on a new regimen of this chemo. This is great news. They haven't even pulled out the "big gun" yet and the cancer is already knocked down and struggling to get up. This could come even closer to knocking it out. Further, the doctor said when she has gone through some treatment with the Xolox, she may even be able to get a little more radiation, helping to knock it out some more.

We were going up there with the expectation of exploring the option of clinical trials. We thought the Gemcitabine was the only chemo option and that we had exhausted the traditional, proven methods. This was a little tough on the nerves.

Nurse Gillian & Mom.
Both amzaing
The recent scan also shows that there is no metastasis (spreading to other organs or parts of the body) which is the best news of all. Mom has also been having increased back pain recently which is due to the recurrence of the cancer cells in the tumor. The option of having a celiac block will be looked at which would greatly reduce her pain levels. The doctor also told her that she isn't taking nearly enough Vicodin (we should all be so lucky!) to control her pain level at night. Mom has always been very pain tolerant and doesn't like popping too many pills. She takes one a night and Dr. Koong told her she could take up to eight a day. She doesn't get nearly enough quality sleep and she has been told that she needs to make that a priority, even if it is drug induced sleep. So, she will be taking two at bedtime and another two if she should wake up in pain. This is good news on the pain control front and should result in better sleep, raising her overall health, and helping her in this fight.

Talking weight loss & food.

The other big issue is her weight loss. Although she looks fantastic in comparison to a few years ago, she is down about 50 pounds. That is a bit too much. The problem is that she has been in excruciating pain every time she eats and therefore eats very small quantities of food. Her protein intake is way down and weight has dropped too much. When they to the celiac block, which will be done endoscopically, they will also take another look at her stomach to make sure there is still no ulcer. The bottom line is that she must eat more and get her weight up a little, or at the very least maintain where she is at now, in an effort to maintain overall health to better fight this off. The good news is that the list of food she can eat is long. She was told to eat all the sushi she wants (which we did for lunch). She'll be trying Mylanta before meals to see if it helps with the pain. It seemed to at lunch today.

So in summary:
Slight increase of cancer cells, but we're left with possibly an even better chemotherapy than before to continue the battle against it. This is awesome news.

Additional radiation is an option, which we didn't think was the case. More awesome.

More Vicodin. Pretty sweet on the pain control.

More food, and the option (read: M.D. order) to put some weight on. Sushi overload!!

Mom is super happy with the results of this visit, as she should be and as am I. It really was nothing but good news, when we were expecting less than good news.

I told Dr. Koong that I was sensing an overall vibe of optimism from him and wondered if I was right in my observation. Are we still in this fight? Have we not run out of options yet? Are we in a good place overall? When he answered me, I had a grin from ear to ear. He said that we was very optimistic still and that we still have some great weapons left in the fight.

A very happy mom thrilled by good news

I am absolutely overjoyed after this appointment and happy to report to you all the fantastic news. We are not in the clear yet, but there is certainly sun shining down through the trees.

My mom and the rest of the family thank all of you from the bottom of our hearts for the continued outpouring of support and prayers. We see that they are being answered and God is good. Thank you. Thank you. Thank you.

Mom, I love you and I'm so happy to see the smile on your face through all of this.

Celebrating life over some sushi with mom


Farrar Four said...

Such great news! So glad to hear all of this positive news! I will keep praying for y'all daily!

Blessings to you both!

Annie- Nashville

Nancy Ann said...

Well, I finally cried. I had been too tense for a week to cry and now....YEAH! Tears of JOY! I am so glad you are seeing Dr. Koong and will be forever grateful to Steph's colleague Anaad for the referral to him. ROCK ON!!!!

Steven said...

Wow, this is truly amazing news. I too am sitting here crying tears of pure happiness. Amazing...

mike steelman said...

So stoked to hear the "good" news. We're still praying!

Arnel said...

Dear Lorraine,

I'm so glad to see this website, as I have been wondering how you are doing. It's great to see that you are still strong and smiling and doing well. You really are amazing! My grandparents would be very impressed, but not surprised, as they always thought you were quite something:)

Hi to Mark, Thanks for including me in this email with the website link. I often think about you guys and your struggle. The photo of you at three days old with your Mom makes me teary (post partum hormones still, I hope). I hope we get to see you again out East or in CA before too long.

Love to your whole family. I will be thinking about all of you.

Love, Caroline Richards (Mark's cuz)

Anonymous said...

You and Mark are my heros! Your optimism and courage are amazing. Keep on keeping on - the world needs you.


Deb said...

Lorraine, this is such great news!!!!!! ☺♥☺♥☺♥☺♥☺

Thank you, God, for listening to the many who pray for our Lorraine!

Thank you, Mark, for making the wonderful news and beautiful photographs available for all of us.

We look forward to seeing you when we visit the cabin next weekend, "landing" on Thursday for some fireworks of celebration.


Deb, Jim, and Family

Peanut Sprout said...

What great news! My husband had great success with Xeloda for colorectal cancer and now is oncologist says that Xelox is the new "miracle drug."

Thinking of your mom often & hope she continues to do so well!!!


Lorraine said...

Thank you for all your wonderful comments. I don't know if my family would agree, but the last picture of the series is like looking into the face of my mother.

Rene Williams said...

Cheers to you Lorraine! We applaud you and continue to pray for your continued victory in this battle. Our God is an awesome God. We know he is covering you and your entire family with amazing grace.


Rene Williams

Amy said...

Mark -
These are such great photos. How is your mom doing?