Introduction

Late February of 2012 Mark was diagnosed with stage 4 Metastatic Melanoma Cancer. This is written for our family and friends who have so caringly expressed a desire to know of the current situation. We so appreciate the love and support that has been shown to us and we lovingly empathize with and pray for many of you that have had or are currently going through trials of your own. In love, hope and faith, Mark and Ane

Time Line



Time Line of Events


2012 


Feb 17 – X-ray followed by CT Scan – Learned of 3 dots in the lungs
Feb 18 – Family doctor said it was most likely Metastatic Melanoma
Feb 21 – Learned of tumor in the liver from nurse scheduling the biopsy
Feb 23 – Biopsy of liver – Learned the tumor was the size of a lime
Feb 27 – PET scan
Feb 28 – Mark to the emergency room because of 'glob' seen in the heart.  Learned results of the PET scan: "...avid metastatic disease in the lungs, right ventricle of the heart, liver, omentum, paraspinal muscles, and soft tissues of the right hip and both thighs."

Mar 1 – Echocardiogram & Appointment with Dr. Urba.  He told us that there was a new drug on the market that had the potential to shrink the tumors and increase life expectancy on an average of 4-6 months, but could be longer.  Mark had to have a BRAF mutation for the drug to work so lab work was sent in. About half of patients with metastatic melanoma have this mutation.  He also told us that without the drug Mark could have six months to a year, although much later he confessed that he really didn't think he could live longer than about 3 months without the meds. At the time he didn't want to discourage us because he hoped the drug would work so he was giving us more of a time frame if Mark had a positive response to the drug. 
Mar 9 -- Brain and heart MRI.  Brain is tumor free! 
Mar 15 – We went to Ecuador to tell Rachel about the cancer.  For a month we had to keep it all very quiet as we didn't want her to find out until we could be with her.  Just before we boarded the plane we found out Mark has the BRAF mutation which allowed him to use the new drug, Zelboraf (vemurafenib). About half of those who take this drug have a positive response.
Mar 16 – Told Rachel about the cancer
Mar 24 – Mark started taking Zelboraf.

Apr 1st -- One week of Zelboraf and the cough was gone!
Apr 14 -- The EKG showed that the tumor in his heart had shrunk to 35% of its original size. 
Apr 21-May 1 -- Precoa trip to Maui. 
Apr 24 -- Heart went into A-Fib – Spent the night in the Maui Memorial Medical Center. 

May 2 – Found out that Mark had Pericarditis
May 4-20 – Trip to Israel  (Plane ride there was miserable for Mark.)
May 7 – The worst day yet – Mark was very sick and couldn’t even take the meds that he had to have.  Dr. Farley changed the pill regiment.  The next day was SO much better!  The rest of the trip was good even though he was often tired and couldn’t do much walking. 
May 21 – X-Ray showed that masses in the lungs have nearly resolved. Heart still irregular, but not as fast – 100 BPM

Aug 2 – Echocardiogram
Aug 6 – Results show the large tumor in the heart is GONE! Dr. Urba reduced the dosage of Zelboraf 25 % to help with negative side effects.
Aug 29 – Appointment with Dr. Zemsky, an electro-physiologist, who let us know that Mark’s heart is in A-Flutter, not A-Fib.  A Catheter Ablation may be able to cure the problem.

Sep 9 – Both PET and MRI indicates no cancerous tumors are evident!
Sep 14 – Catheter Ablation was successful -  normal heartbeat!

Oct 24 – Off all heart medications

Dec 29 - Rachel married Tighe Racicot.  She got to dance with her father! (a dream come true)

2013 


Jan 22 – Stopped the Zelboraf 
Jan 25 – PET scan
Jan 30 – Results of PET showed no tumors.

Mar 4 – Appointment with Dr. Urba – Discussed options of what to do next. He made it clear that we are treading new ground.  Zelboraf typically shrinks tumors - doesn't get rid of them. 
Mar 15 – Chest X-ray showed no tumor growth.  Side effects of Zelboraf subsiding.

May 6 - Met with Dr. Urba - Made the decision to wait to start any new treatments.

Jul 1 -  Another clean chest x-ray! Off Zelboraf for 5 months.  No indication of any tumor activity.  Mark feels GREAT!!!  His hair is coming back in wavy and thicker. Also, he is gaining weight and looking much younger than he did 6 months ago. Dr. Urba used the word remission for the 1st time. We made the decision to do nothing medically unless something changes. Life feels back to normal!
Jul 6 -- Celebrated our 35th wedding anniversary. (last year wondered if he'd make it this long)
Jul 13 -- Mark told his story at the American Cancer Society Relay for Life held at the Lake Oswego High School football field.

Aug 3-12 -- Our trip to Ireland

Oct 2 -- Met with Dr. Urba.  With Mark feeling so good there is no reason to start any new treatments.  Dr. Urba expects it to come back, but when he can't even guess.  Mark is an anomaly. We will meet again in 3-4 months unless Mark notices any changes.


 2014

 

Jan 6Appointment with Dr. Urba.  Mark seems healthy, but we requested a chest x-ray to be sure, and got it on the way home.  Later in the day we got an e-mail from Dr. Urba “FYI-Test Good”!  It has been almost a full year of no Zelboraf and there are no recurring tumors!! 

Mar 28 - PET scan (because of discomfort in his abdomen that has gradually gotten worse)

Mar 31 - Met with Dr. Urba.  Found out results of PET.  One large tumor in left adrenal gland and seven small ones in soft tissue throughout the body.

Apr 9 - Started new meds - BRAF and MEC inhibitors combined. Recent studies have shown more positive response with longer duration when used together.  Hopeful!

May 14 - We spoke at the Creating Hope for Cancer Patients sponsored by the Providence Cancer Research Center.

July 6 - Results of an Ultrasound done on July 3rd: FINDINGS: No obvious mass is present in the left upper quadrant. The adrenal gland or mass are not seen. IMPRESSION: Neither the adrenal gland or mass are identified on ultrasound in the left upper quadrant. Suggestive that the mass is smaller, but either repeat CT or PET/CT scan would much better evaluate.

Aug 8 - PET Scan  
Aug 17 - Results: "FDG-avid left adrenal mass and subcutaneous nodule in the right hip
region are essentially resolved. Other areas of increased FDG uptake
are also resolved.  In comparison to the prior studies, this PET/CT study shows improvement
of disease, with no new FDG-avid lesions, and resolution of numerous old
FDG-avid lesions."
Aug 28 - Dr. Urba confirmed what we understood from the PET report - all of the tumors are gone!!! His recommendation is for Mark to stay on the meds for 3 more months and text again.

Dec 8 - PET results are clear again!  Going off all medications.

2015


Jan 30 - Heart started racing

Feb 11 - Met with Dr. Zemsky and determined it was  atrial-fibrillation.  Went on heart medications.
Feb 24 - Heart went back to normal rhythm.


Apr 24 - PET scan done due to pain in abdomen
Apr 25 - Dr. Urba called with results:  Two small tumors - one in the soft tissue of his thigh and the other on his left adrenal in his abdomen.  Started same medications again, Tafinlar and Mekinist 

June 30 - PET scan showed NO TUMORS!

Nov 17 - All continues to be well.  Staying on medications with only minor side effects.

2016


Aug 19 - PET scan done due to pain in the abdomen.
Aug 22 - Results show one large tumor in adrenal gland.  This is the first time there has been tumor activity while on the medications, indicating that the cancer is finding a way around the meds.  

Sep 16 - Tumor in left adrenal gland removed surgically by Dr. Diego Muilenburg.

Dec 7 - PET scan.  Dr. Urba called with the news that there are numerous tumors.
Dec 9Met with Dr. Urba and saw the scans with around 20 tumors from the face to the shins, some in soft tissue and others in bone. None in critical organs.

Dec 14 - MRI indicated no tumor activity in the brain. Dr. Diego removed one of the tumors on the chest for biopsy to help determine the next treatment. 
Dec 28 - Happy 65th Birthday!  Pain medications such as Oxycodone help relieve pain in hip and abdomen caused by tumors pressing on nerves in bones in the hip and spine.  Biopsy showed high levels of PD-L1 which means Ketruda has a better chance of showing positive results.
Dec 29- Met with radiologist to do mapping for radiation to relieve pain in the hip and spine.
Dec 30 - First treatment of radiation causing initial increased pain and nausea.

2017


Jan 6  - 2nd treatment of radiation and 1st infusion using Ketruda and the clinical trial drug Galectin which in the lab has indicated a boost in positive results used along with Ketruda.
Jan 28 - 2nd infusion of Ketruda and Galectin.  Pain in not as acute.

Feb 6 - Noticeable decrease in size of surface tumors! 
Feb 17 - 3rd Infusion.  

Mar 14 - 4th Infusion and feeling fine!
Mar 31 - CT Scan

Apr 3 - 5th Infusion and last with Galectin.   Results of CT:  All tumors in soft tissue are basically gone. There is a mass in the area where the tumor in the adrenal gland was removed.  It is the about the same size as in the last scan, so while it hasn’t shrunk, it hasn’t grown.  Lesions in the bone are harder to tell with a CT, but they obviously have shrunk since the pain has continued to decrease.  Only a PET scan can indicate if there are still live cancer cells in the bones. 
Side effects are minimal - just some skin rashes on his face and ears.  Increased energy levels indicate that fatigue is related more to tumor activity than as a side effect of the Ketruda.  AMAZING!!!  
Apr 28 - 6th Infusion, this time using only Ketruda. 




1 comment:

  1. Mark and Ane - Found your blog and hoping to catch up after too long. Email me a contact phone # to bleitten at gmail dot com and let me know good times to call. Looking forward to catching up. Brian Leitten

    ReplyDelete