One Year N.E.D.!!!

I am a bit slow getting this out, but it does not change the level of excitment I have for telling you that I am officially:

ONE YEAR NO EVIDENCE OF DISEASE!!!

My scan on September 14th, 2015 was again clean & made it official!  I scheduled my scan on Rosh Hashanah, the Jewish New Year, as I could not imagine a better way to celebrate and contemplate the coming year than by confirming my disease-free state.  I am eternally grateful for the last year of my disease-free life.  

What a gift! 

Thank you all for your support and love throughout this process.  I could not have done this without you.  ((( BIG HUGS))) to all of you!  

The magic number is two years of clean scans, as 80% of those who recur do so in the first two years after treatment.  I still have a high risk for recurrence, but I'm half way to a much lower risk. The longer I am N.E.D. the risk of recurrence reducing exponentially.  So, I celebrate, appreciate, and keep my on fighting and appreciateing each and every day that I have been given.

I will continue to have every three month scans for another year.  I see the radiation oncologist every time I have a scan, so they can monitor the progress of my cyberknife radiation scar to make sure it continues to shrink/evolve and not grow (indicating possible tumor regrowth).  My next scan will likely be a PET scan to confirm that I do not have any "hot spots" of sugar uptake that indicate potential tumor activity. Until then, I will go to the beautiful new Stanford Cancer Center in Los Gatos monthly for my blood work and Vitamin B12 shots.  I also continue to go to my Integrative doctor about once a month to monitor my diet, supplements, and get acupuncture for my low back and hip pain (getting old sucks!).  

I continue to attend support groups at Cancer Care Point. I am always amazed when I get there how much I need the people there and how much they need me too.  What I mean is that I gain a sense of peace among my fellow cancer patients and survivors that I get no where else. Even if they are new to the group, they are immediately part of the cancer family. A club no one wished to join, but one they are glad to not be alone in. I also notice the comfort and hope that I give to those in active treatment - just by being there and sharing my story.  I am living proof to them that with good medical care, taking extra good care of yourself, and a good dose of luck that they too can beat the odds. I feel it is time for me to "give back" where I can.  I have been invited to speak next month at a local woman's philanthropy organization. This will be the first time I have spoken to a group about my disease, but I am thankful for the opportunity to share how community helped me through the tough times with cancer, how they can support loved ones or themselves with their cancer journey, and finally speak to the gratefullness I have for the continued life that I have been given.

What's New

We are mostly settled into our new home in Monte Sereno.  We have several projects in the works that are keeping us busy.  We are remodeling a lower level guest room, and, as you might expect with a house built in 1937, we are finding lots of other issues.  The electrical in the house seems to need an upgrade, we replace a furnace, repairing some foundation framing, etc…..  We are also getting plans drawn to redo the landscaping to drought resistant plants, put in a hot tub for our aching bones, and add a fire pit to the back yard.  We are excited to see the end result (whenever that will be!).  Despite all the work, we are enjoying the new house with its old charm, great light, and outdoor spaces.  We are discovering several hiking routes that are nice and hilly for that extra challenge!  Come check out the new house and let's go hiking the hills or walk into Los Gatos for a good workout.  :-)

The rest of life is busy, busy, busy.  I won't bore you with too many details, so here is a bullet list of what we have been up to:

Riviera Maya - a lovely oasis to recharge our batteries!

• Elyse returned from a fabulous summer abroad program in Dublin, Ireland where she studied physics.  She is now back at UCLA living in an apartment near the campus and keeping busy with Yell Crew and fall sorority rush activities.  She took the MCAT in mid-September, so her journey of applying to med school has begun.  Classes started last week, so she has officially started her Junior year of college.  Boy, how time flies!!!
• Kayla came home in June to help us move and returned to Seattle to spend the summer working and bonding with her new city. She is working as a hostess at Eureka!, a high end burger bar.  She recently applied to be a Red Bull Rep, which sounds like a fun job, so she's keeping her finders crossed.  Kayla is living in her Sorority house and started her Sophomore year at UW last week. 
• Jenna turned 16 in August, recently started her Junior year of high school, and is doing well.  She is making a few new friends and enjoying life a bit more.  She has started a new hobby of working with and riding horses and has been enjoying new experiences (hiking, cooking, philanthropy projects, etc).  
• Craig had and respite from work related travel over the summer, but is back at it this month. He and I enjoyed a fabulous vacation in the Riviera Maya, Mexico earlier this month, and we are trying hard to retain that relaxed vacation feeling.
• I am captaining another tennis team this fall, and loving my time on the court!  I play tennis, hike with Cooper and friends, and go to pilates or yoga regularly. It keeps me busy and hopefuly healthy and on track.  

L'Shanah Tovah - a sweet New Year to All!

9 Months NED and Life Brings Us Change

So Very Happy to be Healthy :-)!

May 1st mark my 2 year Cancerversary of my diagnosis. It has been a remarkable two year journey, and I am proud to continue to call myself a survivor.  Last week I had another 3 month interval scan of chest, abdomen & pelvis.  I am thrilled to report that all remains clear! I am officially 9 months No Evidence of Disease!!!

Last week was National Cancer Survivors Day. I am proud to be a healthy member of this group, and hope to keep it that way. 

My oncologist has now changed my visits from monthly to every other month. I will continue to have a blood draw to check my CEA (cancer embryonic antigen) monthly, but I welcome the less frequent office visits!  Scans will continue to be every 3 months until I hit the 2 years NED mark. Otherwise, my health & energy is good. My hips no longer hurt and my back is much better after regular acupuncture twice a month. I continue to take Celebrex for my joint pain & for its anti-cancer properties.

Change Is In The Air

Goodbye Horseshoe Drive, Hello Greenwood Lane!

With two girls away at college, one in private school, and an intensive drought in progress Craig & I made the tough decision to sell our now too big home on a large lot with a, once again, leaking pool. We have bought a smaller home on a smaller lot without a pool ;-) just 3 miles away in the Monte Sereno foothills.  On June 20th we will go from a 6BR 4bath 3365 sq. ft. home with a 5 car garage to a 3BR, 2bath 2,400 square foot home plus a 1BR 1bath guest quarters and a carport. So, we have done (& are still doing) some significant sorting, throwing away, selling, and donating. It is hard work, but very liberating! We are excited for the change, but a bit sentimental to leave the beautiful house that our 3 girls grew up in and call home. We have lived in this home for 20 years; Elyse was just 9 months old, and Kayla and Jenna were just a thought. But, life changes and we are embracing it.  We look forward to making our new house our own & creating new memories!

Summer

Craig has been super busy adjusting to his split time in the operating room and traveling with the business development position. He seems to like it, but it has come with a significant learning curve.  In time, I believe it will be a good position for him and help to keep things interesting on the work front.  Elyse is home for a few days and then headed to Ireland to study physics at University College Dublin for 8 weeks.  So, glad she has this opportunity to slip in a study abroad in her busy college schedule.  Kayla is spending the summer in Seattle working, exploring her new city, and hoping to get a summer internship.  We are looking forward to having her home later this week for 10 days.  Jenna doing well and in a summer program away also. Craig and I are empty nesters for a while.  This is strange, but it gives us time to work on our new home. Life has been insanely busy, so I hope to find some relax time, play some tennis, and sit by a pool that we no longer have to maintain ;-).

Wishing all of you a fabulous summer!

Jacki

Status, Consultation, Aging, Lifestyle, Awareness, & Radio Interview

My Latest Cancer Status:
In short - I am still N.E.D. and enjoying life.  I see my oncologist once a month and get my blood work done, and will soon have a PET Scan at the end of March to confirm my status.  I also visit my integrative doctor twice a month for acupuncture and diet monitoring.

I did have an important consultation with Dr. Lin in Seattle in early February that shows a promising maintenance protocol to prevent recurrent colorectal cancer (CRC).  The detailed notes from this consultation are at the end of this post.  I am still waiting for the return of my tumor study results to review the effectiveness of this protocol for my situation.  I will let you know how this turns out.  Thank you to my dear friend, Sue Leiter, for coming with me on this trip to help me take notes and mix cancer business with pleasure ;-)!

My Aging Body:
Since around July of 2014 I have been having progressively worsening pain in both of my hips.  As this showed up around the same time that I began Avastin, I assumed it was a side affect of this or other chemo drugs. Chemo can cause inflammation in various parts of the body, joints included.  In February I finally had an MRI of my hips and my low back, as my symptoms had expanded to include low back pain.  Well, I found out that I am just getting old! ;-(  I have small bilateral labrum tears in my hips (small tears in the hip cartilage) and mild bulging of three discs in my lower back. The treatment? - more physical therapy and a lifelong of stretching and strengthening of my back and abdominal muscles.  Thankfully none of this requires surgery. I also shifted my acupuncture treatments to reduce the swelling and quiet the nerves in by lower back and hip area.  So, far all is helping to reduce the symptoms :-) and keep me on the hiking trails and tennis court which makes me very happy!

Staying on Track with a Healthy Lifestyle:
I continue to work on healthy eating and go to the fabulous weekly cooking classes offered at Cancer Care Point, a local cancer support network. I starting keeping a gratefulness journal, to help remind myself of the positive things I have been blessed with. I am also practicing meditation and the use of essential oils as an adjunct to relaxation and improved health. I was recently shown how to perform self shakra balancing (thank you Jennifer MacDonell), which I have begun to incorporate into my daily routine. This all serves to help keep me in-the-moment and my emotions in check.

March is Colon Cancer Awareness Month!
If you follow me on FaceBook, you no-doubt know that March is colon cancer awareness month. The Love Your Butt campaign is raising awareness of colon cancer and reminds us that we need take care of ourselves and be screened for colon cancer once we are 50yo (or earlier if you have a family history of colon cancer). Colon cancer is the 2nd leading cause of cancer death nation wide, and is the most preventable cancer through routine colonoscopy screening.  Colon cancer is occurring more and more frequently in younger populations, well before screening age.  So, please be aware of the following symptoms of colorectal cancer posted by the American Cancer Society:

Signs and symptoms of colorectal cancerColorectal cancer may cause one or more of the symptoms below. If you have any of the following you should see your doctor:

• A change in bowel habits, such as diarrhea, constipation, or narrowing of the stool, that lasts for more than a few days
• A feeling that you need to have a bowel movement that is not relieved by doing so
• Rectal bleeding
• Blood in the stool which may make it look dark
• Cramping or abdominal (belly) pain
• Weakness and fatigue
• Unintended weight loss

Colorectal cancers can bleed. While sometimes the blood can be seen or cause the stool to become darker, often the stool looks normal. The blood loss can build up over time, though, and lead to low red blood cell counts (anemia). Sometimes the first sign of colorectal cancer is a blood test showing a low red blood cell count. 

Most of these problems are more often caused by conditions other than colorectal cancer, such as infection, hemorrhoids, irritable bowel syndrome, or inflammatory bowel disease. Still, if you have any of these problems, it's important to see your doctor right away so the cause can be found and treated, if needed.

My colon cancer presented at age 49 as anemia, because my tumor was bleeding.  I eventually became weak and fatigued.  The tumor was found on colonoscopy while looking for the cause of my anemia. Sadly, my CRC was not easily detectable until it was fairly far along. Be vigilant, pay attention to your body, and stay on top of your screenings.  It may save your life!

Cancer Beat Radio Interview:
On March 3rd, 2015 I had the honor of being interviewed on The Cancer Beat radio show.  It was fun to chat with the show's host Ingrid Regan, who is a fellow CRC survivor and works to spread the word about all things cancer.  I shared my history, treatments, outcomes, and prevention that I have experienced and practice.  If you are interested in listening to this one hour interview, the archive is available here:

http://thecancerbeat.weebly.com/show-archives.html

I am grateful for all of you who have been with me on this journey 

and continue to fill my life with your love and support.  

Hugs, Jacki

Notes from consultation with Dr. Lin, Oncologist, 
Seattle Cancer Care Alliance in Seattle, WA from 2/3/2015:
He is the doctor who is studying the ADAPT Protocol. This is a long note, but has all that I learned from him during my consult as well as ADAPT research study links to follow. This protocol is being shared with a few other cancer centers across the country, as it has been gaining a lot of attention for it's success. Here is what I learned:
--------------------------------------
Review of my cancer history to date.
Looked at recent CT Scan from December 2014 together. Re-confirmed NED.
Pattern of recurrence for me - three mets to lungs (removed), not liver or other organ lymph nodes.
Current CEA slightly elevated CEA (4-5 range for last 6 months).
Original tumor removed with 15/23 lumpy nodes positive.
Original tumor KRAS Mutant, moderately differentiated adenocarcinoma, and lung mets where solid round tumors.
*Monitoring strategies: suggests continued scan testing every 3 months, however instead of all CT scans make it CT scan q 6 months alternating with PET/CT every 6 months.
Discussion:
- Are tumors/cancer cells really gone? Not likely. Cancer cells lay dormant with micro tumors in the bone marrow and wait for opportunity/environment to grow.
- Without treatment stage IV mCRC have very high chance of recurrence, of those that recur 50% will happen within the first 2 years.
- What is ADAPT Protocol: Celebrex 200mg twice daily (400mg/day & Xeloda 1,000 or 1,500 twice daily for 2 weeks on, one week off, or M-F for 3 weeks and one week off, or some variation there of).
- ADAPT protocol is 3 year commitment. Side effects can be managed with dose modifications; weight gain, hand foot syndrome, inflammation/joint pain, etc.
- How ADAPT is believed to work: Typically chemo does not get to the hibernating cancer stem cells that are hiding in the bone marrow. They are waiting for opportune moment & right environment to release & metastasize. It is believed that Celebrex wakes-up the hibernating stem cells hiding in the bone marrow. Once awake & circulating both the Xeloda & Celebrex kill them.
- Studies show Celebrex alone has some anticancer properties; findings - 25% gained 6 months more survival for stage III colon cancer.
- Celebrex & 5FU work differently; Celebrex kills cancer cells in 15 minutes & 5FU in 17 hours. 5FU stimulates cancer cells (queen bees) & Celebrex kills them quickly & 5FU later. Together Celebrex & 5FU potentiate each other & are more effective.
- Check genomic sensitivity on all patients - test shows effectiveness accuracy of approx. 80%.
- ADAPT works well with solid tumors & KRAS Mutants. I have had both of these, so Dr. Lin feels this may be effective for me.
- * They are looking to add immune therapy to the protocol in the future.
- Question from Dr. Chen: "Are there any surrogacy markers for efficacy?" Dr. Lin, "Yes, however I have no funding for them. They are expensive, but can be ordered."

Findings/Outcome for ADAPT Patients:
150 patients studied after a 3 year use of Celebrex/5FU with 30%(no surgery group) to 40% (with surgery group) patients achieved complete response (full remission) for >5 years.
* If my tumor studies show favorable responses in tumor studies to this treatment protocal the survival numbers could be higher than those in the study.

My Treatment Plan:
1) Blood tests as ordered & drawn at SCCA to predict - included: CEA, CA 9-19, other cancer markers, and routine labs.
2) *Plus study blood draw: "Performance Characteristics of a New Circulating Tumor Cell Assay" = CTC. Normally a $2k test - results to Dr. Lin.
3) Send fresh frozen tumor sample from Stanford lung surgery to FoundationOne (Roche) for testing to predict the effectiveness of ADAPT protocol for me & predict effective meds for potential future mets. Results within 2-4 weeks. *Dr. Lin would like to get this going ASAP.
4) After test results back, if shows I am a good candidate/positive tumor response for Celebrex/Xeloda maintenance then begin ADAPT Protocol if I choose to move forward with the protocol.