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:
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.
- 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
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."
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.
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.
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.
