Tumor Board Update (01/24/2013)

Forty nine and feeling fine…

On Sunday I turn forty nine years young. And I am lucky and happy to say that I feel fine at 49!

We went to University of Michigan Health System today to hear the recommendations from the Tumor Board. The surgeon we were seeing was on time for the appointment and was quick to give us the update.

The Tumor Board reviewed my case and the recommendation is to receive chemo therapy (surgery is not an options right now). If the chemo is successful in stopping the tumor growth I may be a candidate for surgery in the future.

He explained that there were two larger tumors in the liver that are operable; however there are also three additional smaller tumors that are located in different sections of the liver. Unfortunately these other lesions are too small to cleanly remove via surgery. If they were to remove the two larger tumors the smaller lesions might be left to grow / spread and negate the benefit of surgery.

He also reported that the PET scan showed uptake in a spot near the 6/1/12 surgery done on the colon. Even though the colonoscopy showed all clear this uptake was outside the colon (e.g. it wouldn’t be visible on the colonoscopy). This would likely require another colon resection in the future assuming the tumor growth can be stopped with the new chemo.

So the hope is that the Folfiri and Erbitux chemotherapy will

1. stop/shrink the tumors in the liver and outside the colon,
2. that no additional tumors show up and
3. I become a candidate for surgery.

Frustration!

So far I have encountered a couple different discouraging/frustrating bumps in my battle with cancer. The first was that I went months reporting symptoms to a couple different doctors in the Battle Creek cancer center before a colonoscopy was ordered. Might the colon tumor have been found much earlier if the good Battle Creek doctors had ordered a colonoscopy sooner?

Okay, problem fixed – move onto University of Michigan Health System, with more advanced equipment and more experience doctors???

And now we retrospectively look back and know that the numerous CT scans done at U of M showing a normal/healthy liver were actually not accurate. All the while we were thinking the liver was clear there were actually tumors growing. Who knows, it is possible that these tumors were present before beginning chemotherapy.

Why did the U of M doctors wait for rising CEA levels to do a MRI on my liver? Given that the liver is at high risk for colorectal cancer metastasis and given that MRIs are more accurate than CT scans in detecting tumors in soft tissue it seems like an MRI should have been done sooner, maybe as part of the pre-screening / baseline testing? If they had done an MRI sooner, perhaps we would have dealt with the tumor surgically and I’d be looking at a different prognosis right now?

I don’t raise these points to complain. I don’t believe in could-of/would-of thinking. However, maybe there are some lessons to be learned that might make a difference to someone else in a similar predicament? So what are the lessons?

1. If you have symptoms of cancer make sure the proper tests are done ASAP!!! Persistence may be required!!! Please get it checked out and be persistent! Catching it earlier than later makes a huge difference in the prognosis.
2. GET A COLONOSCOPY if you are 50 or older! Or if you have any symptoms of colon cancer! A colonoscopy is an easy procedure that could prevent a long battle with cancer!
3. Learn about the tests they use to check / monitor cancer. MRI, PET Scan, CT Scan, Chest X Rays… I will be posting this one in more detail on the Cancer Survivor Network as I feel I might have insisted on an MRI of the liver, knowing what I know now! Maybe someone in a similar predicament might benefit from my story!
   Cancer is certainly a difficult and challenging disease to battle.

The physical, emotional, and mental impact is significant! Trying to understand what cancer is and the different cancer treatments can be overwhelming.

I pray that a cure for this ugly disease is discovered soon!

God bless you all and thank you for your continued prayers and support!!!

I know God has a plan, although I don’t know what it is I’m certain it is the best plan for us. But I have to admit that I am hoping a cure is part of the plan and that the cure shows up soon.

Sincerely,
Phil

Onto some lighter news — I WON A CAR

This is a fun story! I never win anything and winning a car (albeit a used car) is cool!

We all get mail from the various car dealerships advertising the sale and guaranteed prizes. Well, if it is convenient I will visit the dealership to see if my key fits the new car or to check my numbers and see which prize I win. I don’t expect to win the grand prize but I’ll take the football or basketball or hat.

Well, I received a flyer from Cole Chrysler dealership in Marshall (just down the road from my house) and I stopped in to see which prize I won. As expected I received $5 gift card to Walmart (and was happy for this).

The sales person also explained that they were raffling off a mystery used car on Monday night at 7:30pm. He also explained that you had to be present to win!

This past Monday was a very snowy day. And when 7pm rolled around I almost didn’t go to the raffle. But then again, it was close and my step daughter Alexis agreed to go with me.

And when we arrived we realized that our chances were good – there really were NOT a lot of people there for the drawing.
So the drawing time came and I they picked my name! Yah, I won a used car.

When we arrived at home and were faced with all the questions about the prize, I realized I didn’t even know the year or mileage on the car. But I did know it was a white Grand Marquis, missing a hub cap, and had a crack in the bumper.

So if you know of anyone looking for a car — http://alturl.com/e7ds2

Another bump in the road (01/17/2013)

Connie, my sister Mary, and I arrived at University of Michigan Health System (UMHS) facility at 2pm today. The blood draw was completed quickly but doctor appointment was scheduled for 3:30pm (hurry up and wait). We were seated in patient room 37 at 3pm. I thought we might get to see the doctor earlier than scheduled. We ended up waiting in the patient room for an hour. The doctor arrived a little after 4pm and gave us the update.

The MRI shows two small tumors in the liver (sizes are 3cm and 1.8cm). The MRI images are also not completely clear and another MRI may be required before deciding on next steps. The oncologist reported that tumors in the liver are surely the source of the climbing/fluctuating CEA levels. The other news was that the CEA level went down from 40 on 1/2/2013 to 20 today (20 is certainly a big drop but far from the normal range).

The next step is for the UMHS Tumor Board to review the MRI results and recommend next steps. The possible next steps are:

– Another MRI done under sedation (hopefully with clearer results)
– Surgery to remove the tumors
– Chemo (folfiri and erbitux) to shrink the tumors, followed by surgery
– Chemo alone if the tumors are not operable
– Focal Radiation therapy

The best option that we can hope for is surgery. If the tumors can be surgically removed there is still a chance for full cure. If the tumors cannot be surgically removed the chemo treatment may reduce the size of the tumors and slow the growth.

The tumor board will do their review in the morning on 1/24/2013. I will meet with a Hepatopancreatobiliary Specialist/Surgeon on 1/24/2013 at 1pm to review the Board recommendations

Sad to note: I don’t think I know how to pronounce “Hepatopancreatobiliary.”  🙂

As I said in previous blogs, our current state-of-the-art technology is still far from perfect. How can the CT scan and PET scan show a clear/healthy liver and the MRI scan show two tumors? Can an MRI image that was deemed poor quality due to breathing be relied upon for surgical decisions? How can the “rising” CEA level climb and then fall like it does if the cancer continues to grow? Is there any significance to the large drops in the CEA levels? Unfortunately the doctors don’t have all the answers…

And so the fight continues, with partial and imperfect information. Your continued Prayers are hereby formally requested (and very much appreciated)!!!

I wish I had a little break between the initial chemo and what looks like a bumpy road ahead — but it is what it is.

Thank you all for your continued support and prayers.

God and Peace be with you.

Phil

PS. The pictures are from the Family photo session we did over the holidays (Thank you Liz at YourLittleWishes). These were the first two pictures completed. We’re looking forward to seeing the other pictures soon!

Dr. Visit (01/03/2013)

Scans are Clear but CEA continues to climb…

Today we went in for a doctor visit to review the results from the chest, abdomen, and pelvis CT scan (done on Sunday December 30).  The good news is that the scan shows all clear.  The bad news is that today’s CEA level jumped up from 19 (test from 12/13) to 40 (test done this morning).

Given the rising CEA the doctor wants to do more tests to see if he can find the source of the rising CEA (tumors?).  So now I’m scheduled for a colonoscopy (1/7), PET scan (1/15), and MRI (1/15).  I’ll receive a CEA test on Thursday 1/17 as well as meet with the doctor to review the results of these additional round of tests.

The lesson I’m learning from all these tests is to live life one day at a time,   And most importantly, resist fretting or worrying and to simply Trust in God.

Holidy Update:

Connie and I were lucky to enjoy a nice break from work over the holidays.  And Sarah came home for the holidays as well. And we all did a few things over the holidays as well, living life one day at a time!

On Saturay 12/22 were all attended the Scamihorn Family Christmas (Thank You Mary and Jim for hosting us all).  My entire family was present! The first picture below are of me, my brother and four sisters.  The second picture is of our entire family (a rare time where we are all together).

On Sunday 12/23 we attended the candle light Christmas services at First Wes in Battle Creek. The music and homily were exceptional! Christmas Eve was a quiet evening at home. Christmas day was a good day with presents, a delicious breakfast, and a day of games, movies, and family fun. On the day after Christmas we all went to Kalamazoo for a family photo session (in the snow as it turned out).  After two hours of photo’s we went to Burdicks and enjoyed a delicious family dinner. I am excited to see all the different pictures (hopefully we’ll see them soon).

Sarah’s flight home was on 1/30. Good news, her flights were on time this year! Several of us gathered at the Motor City Brewery to have lunch with her before dropping her off for her return flight to Boston.

On Friday 12/29 25 of us (friends and family) went to a K-wings hockey game!  We got to see and touch the Stanley Cup as an extra treat!

Towards the end of the holidays, in time for going back to work, I ended up with the head cold that is going around.  I think the worst of it is behind me now.

Your continued prayers are welcomed and appreciated!

And know that I continue to pray for all of you as well!

Love to all of you as we begin this new year!

Sincerely,

Phil.

Treatment 12 of 12 (12/13/12)

Treatment 11 of 12 went as planned.  The blood platelets were down but not under the “do not treat” threshold.  This treatment was uneventful and there wasn’t any new news to report so I decided to wait for the final treatment to do an update.

I arrived at U of M a little ahead of schedule today, at 8:05am.  The lab was super busy this morning (probably due to holidays).  After waiting a little longer than normal I was called in for the blood draw. The nurse accessed the port but failed to get a blood return from the port.  So, instead of using the port for the blood draw she used a vein n my hand.

The next stop today was a doctor visit.  The doctor arrived for my appointment a little after 9:30am.  The doctor gave the following update. My CEA level from the 11/29 test was up to 24.1 (I’m still waiting for today’s test result). Regardless of today’s test, the doctor recommended cancelling today’s chemo treatment and scheduling another chest and abdominal CT scan.  He felt that the climbing CEA levels were an indicator that the chemo was not working.  And even though the 10/1 CT and PET scans were clean he wanted to do additional scans to see if there are any signs of Cancer growths. He also felt that the risk of permanent neuropathy was not worth the additional chemo treatment.

The CEA level of 24.1 is higher than the CEA level from pre-surgery testing. Again, the CEA is used as an indicator of cancer activity; however, it is not a 100% reliable indicator (it can increase due to non-cancer activity as well).

The doctor also prescribed an additional medication that will help open up the port so they can get a blood return. So instead of receiving chemo today I’m waiting for the medication to take affect so they can make sure the port is working as expected.  So far I’ve been waiting for a few hours but still no success???

Another CT scan is scheduled for Sunday 12/30.  We’ll meet with the doctor on Thursday 1/3 to get the results of his scan. If the CT scan doesn’t reveal any possible cancer nodules and the CEA levels continue to climb the doctor will recommend additional tests to look for hidden signs of cancer growth (e.g. MRIs).  If cancer is revealed in the CT scan then additional surgeries and chemo will be considered.

So more waiting and uncertainty…  And disappointment if I truly underwent 11 treatments of chemo that didn’t actually help me…  A marathon???  Cancer truly does SUCK!

On the good side I don’t have fight through the side-effects of another treatment today.  And I will be able to attend Anna’s college graduation ceremony on Saturday.

Yes, Anna is graduating from College!!!  She will receive Bachelors of Arts in Business Communication on Saturday evening.  We are very proud of Anna!!!  And we are looking forward to Tony and Alexis graduating soon as well.

I thank you all for your continued Prayers and I wish you all a Very Merry Christmas and a Happy New Years!

Sincerely,

Phil

Treatment 10 of 12 (11/15/12)

Good News and not-so-good news

Today’s visit started with the good news from the doctor’s assistant.  The CT scan from Monday 11/12 showed that the 3mm lung nodule has shrunk to a negligible size — it is barely visible on this latest scan.  That means I don’t need surgery in the near future. Yay!

The CEA test results were not immediately available when we were meeting with the doctor’s assistant. Then the doctor came in and gave us some not-so-good news.  The CEA Level climbed to 13.3.  He was especially concerned because this climb occurred while taking a break from chemo.  He also pointed out that the CEA level correlates with cancer activity in my case (e.g. the levels were higher pre-surgeries and came down considerably post-surgeries).  Given this correlation, he is concerned that the elevated CEA level is indicative of cancer activity.  However, I have recently completed scans (PET and two CT scans) and no cancer was visible on these scans.  He did say that there could be tumor activity in the abdomen but that is unlikely. His final recommendation was to complete the next three chemo treatments (hopefully with the oxaliplatin drug) and monitor the CEA levels every two weeks.  So that is the current plan.

The following chart shows my CEA levels since they have started testing:

It is important to point out that cancer blood markers like CEA are not 100% reliable.  They have been known to rise and fall related to non-cancer activity as well.  So we need to watch this marker while keeping a proper perspective. CT and PET scans are the more reliable way to find and verify cancer activity and elevated CEA simply means we will watch the scans very closely.

Update on personal items:

Connie, Tony, and I went to Chicago and saw Kinky Boots.  The production was excellent and if you have an opportunity to see it I highly recommend. We had dinner with Jerry Mitchell (Kinky Boots producer) and Tony was elated to have had this time together.

Connie and I went to Seattle.  I attended PASS Summit 2012 and it proved to be a very captivating summit once again.  The presenters at this conference really make it a valuable learning forum.  Connie and I also enjoyed the evenings as well.  We definitely ate too much good food and the time together was very relaxing and restful.

Bryce started basketball and that keeps us active as well.  So far they have played three different games.  The team is still looking for their first win but they have been improving and learning each week and I’m hopeful some wins will be found soon.

Connie and I have been enjoying a new app on our phones.  It is called YouVersion and it is a free, online Bible.  I highly recommend this app as it includes various plans for reading the Bible.  The plans organize some short readings and include pasture comments about the various passages. I think the plans are a really captivating and educational way to read and learn from the bible.

So once again, I thank you all for your prayers and well-wishes.  And I especially thank my friend Kathy for reminding me that this cancer fight is more of a marathon than it is a sprint.  I think I mentioned this in an earlier blog but the reminder was something I needed.

Thanksgiving is approaching fast! I have so much to be thankful for. I am especially thankful for a wonderful family, excellent friends and awesome colleagues.  I am truly blessed to have such wonderful people in my life!!!  So once again THANK YOU all for being special blessings to me!

God Bless and have an awesome Thanksgiving!!!

Go Lions!

hummm…. I wonder if cheesecake can make the CEA levels go up? 🙂

Treatment 9 of 12 (10/18/2012)

It rained most of the way from Marshall to UMHC. We arrived around 8:15am today (15 minutes late).  Blood draw and port hook up took about 35 minutes (much longer than normal).  Then after waiting another 45 minutes in the infusion area we were told to go back down for yet another blood test. We were over 2 hours late getting into the chemo area today.

Meanwhile, I received an email from my doctor.  My platelet count is down once again – which means I will not receive the oxaliplatin once again.  So, if this treatment turns out to be like treatment 7 it will be a little easier on me (oxaliplatin was withheld in treatment 7 for low platelet count as well).

The other news the doctor shared with me is that my CEA level has come down as well.  It was 10.1 in the last test and today it tested as 6.3. That supports the doctor’s theory that the rising CEA was most likely related to the chemo and not to tumor activity.

I will be traveling to Seattle for the Professional Association of SQL Server (PASS) 2012 conference.  Because of the travel Treatment 10 is scheduled for 11/15.  So I will go without chemo for a couple weeks.  The break from chemo is definitely welcomed.

As you all recall, I still have the small nodule in the lower lobe of the right lung to wonder about.  The follow-up CT scan is scheduled for Monday 11/12 at 7:30am.  Unfortunately I will have to wait until the Thursday 11/15 appointment to hear the results of this scan.  And the results will be discussed with my new doctor (as you recall Dr. Fakih is leaving UMHC on 10/19).

So, hopefully this treatment will be easier than others. And the 11/12 scan will show that the small lung nodule has disappeared altogether. And Treatment 10 will go on as planned. And we’ll find that the cancer has gone to remission.

It’s hard to believe but as this Halloween approaches it will be one year dealing with cancers.  Last Halloween we found the testicular cancer and went through the first round of cancer challenges.

Other updates:

Between working and social activities I’ve had a busy couple of weeks.  Two tiger games, two of Bryce’s football games, and a play at Wayne State University.

Next week-end we will be going to Chicago to the musical Kinky Boots, being produced by my cousin Jerry Mitchell.  We will have dinner with Jerry and this is an opportunity for my son Anthony to meet a Tony-award-winning producer / choreographer.  Seeing the musical will be fun but having time with Jerry and Tony will be really special.

And as I mentioned above, Connie and I will be travelling to Seattle Washington on 11/4.  We are looking forward to the trip.  Connie will do some relaxing and homework during the days and we’ll enjoy the evenings together. We’re thinking about going to the Seattle football game on Sunday 11/5.  We also want to visit the Space Needle and Pike Market.

Thank you all for your continued Prayers and kind words.  Your support is GREATLY appreciated.

Love and Light to you!

Phil

Treatment 8 of 12 (10/4/2012)

Today is treatment 8. We saw the doctor today as a follow-up for the PET and CT Scans done on 10/1. The scans show a small nodule (3mm) in the lower right lung.  This nodule is too small to determine if it is cancer or not. It could be that the nodule is related to congestion / inflamation or it may be another solitary tumor. The tumor that was surgically removed on 6/1/2012 was also in the lower right lung.  That nodule was 14mm when it was first detected and 18mm when it was removed.

The prognosis for this nodule is to watch it closely — I will receive another CT scan in six weeks.  If that CT scan shows growth in the nodule the recommendation will be another lung resection surgery to remove the nodule and determine if it is cancer or not.  If it is from congestion / inflamation it will likely not be present in another six weeks. If the nodule turns out to be cancer I will stop the FolFox chemo treatments and a new treatment plan will be developed.

Today’s treatment will include a reduced amount of oxaliplatin. I will likely have the side-affects similar to previous treatments; so I expect that Saturday and Sunday will involve a lot of sleeping.

I know you all are praying for me and I know that God has a plan for me.  And I’m confident that God’s plan will prevail and it is exactly the best plan for me.  The only frustrating part of this is I don’t know what God has planned, then again few of us actually do know.  None of us can see what God sees and therefore I surrender my life to Jesus and trust that he will help me be the best servant I can be.

Today, instead of requesting your prayers for me, I request that you pray for my family, especially for Connie and my step children.  Connie and I were married on 7/11/2009 and we were excited to begin a life together.  Our plans are to see our children graduate from college and begin lives of their own and to spend quality time spoiling future grandchildren. Cancer was NOT part of this plan. It was especially not part of the short-term, five year plan!

Connie and her children already had to deal with cancer once in their lives.  Connie’s first husband Bruce battled cancer for three years and succumbed to the cancer on October 7^th, 2005.  This was a very stressful time for Connie and her children and I ask you all to pray for them, on the anniversary of Bruce’s passing. No one should have to deal with this ugly disease; but having to face it twice is an unfair twist of fate.  I really feel bad that Connie and her children are now part of my battle with cancer. I’m very happy they are here with me, but I am saddened that we all have to live with a cancer cloud looming over us.

So please pray with me that Connie and our newly blended family receive God’s love and feel God’s peace in our hearts and souls, in spite of the cancer challenges. Amen

Treatment 7 of 12 (9/20/12)

We arrived at U of M at 8am. Blood work was completed quickly and then we proceeded to the doctor’s waiting room.  We finally saw the doctor around 9:45am.  He reviewed the blood results and talked to us about the next few weeks…

My platelet count was 64. Unfortunately, that is lower than what the doctor would like it to be.  The platelets help with blood clotting in case of a cut/injury.  With a low count I run the risk of an uncontrolled bleed. Given this risk the doctor has eliminated the oxaliplatin from the mix of chemo drugs I will receive today. The good side of this change is that the oxaliplatin side effects should also be eliminated.  I suppose that the bad side of this adjustment is that I will receive one less cancer fighting drug today. In any event, the side effects of this drug included neuropathy (tingling / numbness in hands and feet), cold sensitivity, and jaw pain.  I certainly will not miss these side effects. He has also will lower the amount of this drug on the remaining treatments.

The blood test also shows that I have a low Neutrophil count.  This means I have an elevated risk of infection. Extra precaution was advised; including washing hands, using hand sanitizers, and avoiding sick people.

My CEA level has increased as well (hovering between 8 and 9).  As you may recall from a previous posting, the CEA level is correlated with tumor activity.  The doctor assured us that CEA increases could also be a result of receiving chemo, so tumor activity is not the only cause of increases.  In any event the doctor has scheduled a PET and CT scan to be done on 10/1/12. Hopefully these scans will show no evidence of any further tumors. And hopefully I won’t be too anxious about these upcoming scans and potential results.

The other news received today is that my doctor is relocating to Los Angeles California.  He will be leaving U of M in a few weeks. So my last visit with him will be on 10/4/12, when we review the scan results.  My doctor assured us that his colleague is a very good doctor and that he will take good care of me throughout my remaining treatments. We will probably see the new doctor on 10/18.

I will be on the pump until Saturday afternoon and probably sleep away Saturday and Sunday this week.  Hopefully I’ll feel good on Monday (working from home) and be back to work on Tuesday.

Thank you all for your continued prayers and support throughout this journey.

Sincerely,

Phil

Treatment 6 of 12 (9/6/2012)

half way done with chemo!!!

As you may have read in my previous post, I requested prayers for my 3^rd cousin from Tennessee — 16 years old Taylor Filorimo (Tay). Tay battled Renal Cell Carcinoma for three years.  Tay passed away yesterday at 12:54pm. She was at peace and was surrounded by family and Love.

While I never met Tay personally, I did a lot of Praying for her over these past months and I spent time learning about her from her Facebook postings.  I felt a connection with her given that we are both cancer victims and that we are family.  Tay has endured a lot during her fight. Like any cancer patient Tay spent a lot of time in the children’s cancer center. Unlike most cancer patients a significant portion of this time was spent visiting and Loving the other children. She had a huge heart and opened it up to all the other children fighting this ugly disease. And she Loved to Love them every chance she had.

While I am saddened by Tay’s passing I am greatful that she is not suffering and is now in heaven with our LORD.  Please join me in praying for Tay’s family — that they will find peace and Love during this sad time.

This treatment marks the half-way point for chemo for me.  I’ve been lucky managing the side-effects and lucky to rebound from the treatments in a relative short time.  And the side-effects have not been too debilitating! I will spend this weekend sleeping and resting and hopefully make it back to being productive on Monday. And then feeling a little better with each passing day up to the Treatment 7 of 12.

Thank you all for your continued prayers and support.

God Bless Tay’s family and friends.

Shes A Hero (MP3)  — Tay’s Song!!!

Pray for Tay (8/30/2012)

Taylor Filorimo (Tay)

My third cousin Taylor was fourteen years old when she learned that she had a rare form of cancer — Renal Cell Carcinoma. She has been battling this cancer for three years now and she needs your prayers today. She is currently taking chemo and is in severe pain.

Please Pray with me for Tay…

LORD we ask that you relieve her of the pain she is in. And work through her nurses to provide the care she needs today. Jesus we ask that you heal her from this horrible disease. Jesus, work through her family and friends — give them strength and use them to shower Tay with Love. Amen

And please watch and share this video of a Tay’s song (She’s a Hero) written by Tonja Rose. The video and song are very beautiful and reveal how Tay has been most concerned with helping other children fighting cancer. Tay is a beautiful young woman and has inspired many.

And Today Tay needs our Prayers.

Love and Peace be with you all!